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Not All Doctors Get Informed Consent — Here’s Why It’s Hurting Patients

Source: Forbes
Mar 28, 2016,07:00am EDT

Nichole Bazemore, Former Contributor: Amino, Contributor Group: Pharma & Healthcare

  • This is the second in a series of articles that focuses on your rights as a patient—both inside the hospital and out. First up, we explored the Patient’s Bill of Rights (yes, that’s a thing!). Today we’re focusing on everything you need to know about informed consent.

According to the American Medical Association (AMA), a patient can only make an informed choice about whether or not to receive a treatment if they have enough information about the treatment, its benefits, and side effects.

It’s called informed consent, and it’s your doctor’s job to provide you with this information.

Photo by Adobe

Photo by Adobe

Informed consent is meant to honor your right to decide what’s done with your body. Rules and the law pertaining to this topic have changed over the years, but one thing hasn’t: Failure to obtain informed consent is a crime—medical malpractice, specifically—and the doctor can be charged with negligence and battery.

Your doctor or healthcare provider must give you enough information about your treatment so you can make an informed decision. But just how much information is “enough?” The AMA lists six basic features that make up informed consent:

  • The diagnosis, if known
  • The nature/purpose of the treatment or procedure
  • The risks and benefits of said treatment or procedure
  • Alternatives to the treatment or procedure
  • The risk and benefits of alternatives
  • The risks and benefits of not having the treatment or procedure

Informed consent isn’t required for all procedures or in all situations. For instance, in all but a few cases, minors can’t provide informed consent—their parents or guardians assume this responsibility. It’s also not required in cases of life-threatening emergency, where you may not be conscious to give consent; nor in cases where you have impaired decision-making ability, as in dementia. In this instance, doctors must find an alternate decision maker, like a family member.

Standard practices vary when it comes to doctors getting informed consent, and that hurts patients

There is no “right” way to obtain informed consent. In fact, while all 50 states have laws that mandate some form of it, the specifics vary from state to state and region to region. In addition, each medical institution typically develops its own list of surgeries, procedures or situations where informed consent is needed.

Jennifer Schmid is a naturopath and registered nurse in Santa Clara, CA. She says that lack of consistency, combined with other issues affecting the healthcare industry, create barriers to obtaining true, informed consent in many situations.

“The reality is that we have a system-wide failure as far as patient empowerment and informed consent go. Insurance companies dictate the choices they’ll pay for. Doctors are limited in their time. Patients don’t know what to ask. [When they do ask a question] it’s sometimes hard to get a straight answer. People really aren’t given answers that make them feel empowered.”

And that’s unfortunate, Schmid says, because research shows that patients who feel more empowered about their healthcare have better outcomes and higher survival rates. The only way to achieve this in an overburdened system, she adds, is for patients to be their own best advocates. Schmid urges patients to take the initiative—to do the research and ask the hard questions to make sure you’re informed before you undergo any procedure.

“A lot of people don’t realize they have the right to ask their physician or prescriber for information about the procedures and medications the provider is recommending,” she says. “I really want people to know that they have the right to ask. If the doctor is too busy, ask the resident. Don’t be afraid to be empowered.”

You’re allowed to refuse treatment

A key component of feeling empowered about your healthcare is having the freedom to refuse treatment after learning about the risks and benefits involved. You have this right, even if your doctor believes it’s a bad decision. This is called informed refusal.

But there’s a catch: If your doctor believes for some reason that your decision-making capacity is compromised (in cases of extreme emotional stress or intoxication, for example), you may not be allowed to refuse treatment. In this case, the law would side with the doctor, holding that the average reasonable person would consent to treatment in order to prevent permanent disability or death.

There’s really only one way to make sure your wishes are honored—and to maintain control of your treatment decisions in these situations: Fill out an advance directive and living will while you’re healthy. These allow you to decide—while you’re competent and before an emergency occurs—what treatments you do or do not want, should an emergency, illness or injury happen that renders you incompetent.

In our next article, we’ll examine patient advocacy—what it is, why it’s important and how to do it. Nichole Bazemore

Nichole Bazemore is a freelance writer in Atlanta.

Were you aware of informed consent? Do you know what informed consent is in your state? How could informed consent effect the quality of your health care?

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Portland VA: Human Experiments Unethical, No Consent

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Source: Disabled Veterans
Feature Photo Source: Unsplash, Robina Weermeijer
A consumer group named Public Citizen filed ethics complaints against Portland VA for unethical kidney transplant trails at the facility that lacked consent.

The trial paperwork indicated the kidney transplant trial subjects were deemed “nonhuman” despite kidneys being transplanted into live humans. The study failed to seek informed consent through normal channels because of the “nonhuman” classification.

The Portland VA Medical Center and University of California, San Francisco (UCSF) were involved in the study. Drs. Daren Malinoski and Claus Niemann led the study. Dr. Malinoski works at Portland VA. The Institutional Review Board (IRB) was conducted by UCSF.

The complaint from Public Citizen said participants in the study were not informed of the nature of the transplanted kidneys. Those kidneys came from brain dead donor bodies where the body was cooled prior to removal of the kidney as part of a study. The kidney gathered at experimental temperatures was then placed into a live human for research.

The purpose of the study was to gauge whether colder kidneys would result in quicker acceptance of the organ. The meta-goal of the study was to find cheaper ways to transplant kidneys.

PORTLAND VA / UCSF STUDY ERRORS

The recipients were apparently not informed. According to the Public Citizen complaint, the organizations failed to reach a few obvious and common sense related conclusions prior to the study being conducted:

  • Failure to recognize trial as involving human subjects research
  • Failure to satisfy IRB review and approval requirements

Not surprisingly, these two researchers and the IRB panel failed to recognize the subjects of the study were human. While the donors were brain dead, the recipients of the kidneys subject to the cooling experiment were most certainly human.

Should we be surprised that Ivory Tower type researchers would erroneously conclude recipients of experimentally harvested kidneys are not human? Do you ever wonder if VA at large considers us humans with rights, at all?

The complaint indicates that the error of judgment about the humanness of the study resulted in the participant doctors failing to seek informed consent from the 572 recipients.

This news made me wonder an obvious question:

How many more similarly mistaken IRB reviews have concluded veterans are not humans where informed consent is required?

In the name of conducting human experiments to save money, researchers apparently concluded humans were not humans. How many of these “nonhumans” were veterans?

Source: https://www.citizen.org/documents/2315.pdf

What are the benefits to medical professionals Not to obtain informed consent? What are the financial benefits to the medical professoinals Not to obtain informed consent? Do the ends justify the means?

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Thousands of Latinos were sterilized in the 20th century. Amid COVID-19 vaccine hesitancy, they remember

NADA HASSANEIN | USA TODAY | 4:14 pm EDT March 16, 2021
Source: USA Today
Photos Source: USA Today

Source: USA Today
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The CDC says people who are fully vaccinated may get together with other fully vaccinated individuals in small groups without masks.STAFF VIDEO, USA TODAY

Consuelo Hermosillo’s 22-year-old granddaughter didn’t want to get a COVID-19 vaccine.

The office worker at a special needs center was afraid the shot would prevent her from ever getting pregnant.

The mistrust didn’t form out of thin air.

In 1973, Hermosillo, an immigrant from Mexico, worked a small catering business at home while her husband bartended and unloaded appliances at a department store. In November of that year, the 24-year-old went to a hospital for an emergency caesarian section to give birth to her third child.

The baby would be her last.

Hermosillo was sterilized without informed consent at the Los Angeles County-University of Southern California Medical Center.

“You better sign, or your baby is going to die,” she said a nurse told her.

Her signature is scribbled on aform allowing the procedure, but she doesn’t remember signing, saying she was medicated. She didn’t know she was sterilized until a doctor’s appointment later when she asked for birth control.

A whistleblower – a residentphysician later let go by the hospital – leaked that the practice occurred on many women. Hermosillo became one of 10 Mexican and Chicana plaintiffs in the landmark Madrigal v. Quilligan federal class-action case, which grabbed headlines in the mid-1970s. The judge sided with Dr. Edward James Quilligan, and the women lost, but the case inspired legislation passed in 1979 to abolish the practice in California. 

The Los Angeles County Board of Supervisors issued an apology in 2018 for the coerced sterilizations, but the women did not receive reparation money as victims did in other states, such as Virginia and North Carolina.

“As far as justice, they never received that,” said Virginia Espino, who documented the women’s stories as co-producer of a film called “No Mas Bebés,” (“No More Babies” in Spanish).

Consuelo Hermosillo says she was sterilized at a hospital without her knowledge.
Source: USA Today
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Consuelo Hermosillo says she was sterilized at a hospital without her knowledge. CLAUDIO ROCHA

Espino, a professor at the University of California, Los Angeles, and an expert in reproductive injustice, said it’s unclear how many women were sterilized at the LAC-USC medical center. The lawyer for the women who brought the lawsuit estimated “hundreds.”

Many didn’t speak fluent English and didn’t understand forms they signed, and in some cases, they werecoerced into signing. Many had labor complications and were told lies that they or their babies would die if they didn’t sign.

Insidious sterilizations didn’t occur inside that hospital only. Throughout the 20th century, about 20,000 women and men were sterilized in California alone under state eugenics policies, according to researchers, including University of Michigan professor Alexandra Minna Stern.The policies targeted patients of state-run asylums or group homes. A disproportionate number were Hispanic.

As COVID-19 vaccine rollout continues, hesitancy among vulnerable communities, including Hispanic people, is piqued – and history is unearthed.Experts and those within the communities say the skepticism partly stems from unethical medical practices that targeted people of color. Unwanted sterilizations didn’t occur just in California among Mexican women but among Black women in the South, as well as Native American women. It’s not a pretty picture’: Why the lack of racial data around COVID-19 vaccines is ‘massive barrier’ to better distribution.

From the 1930s through the 1970s, for example, about a third of the female population in Puerto Rico was sterilized under population control policies that coerced women into postpartum sterilization after their second child’s birth, according to the University of Wisconsin’s Office of the Gender and Women’s Studies Librarian annotated bibliography on the topic. The first large-scale clinical trial for contraceptives involved Puerto Rican women: In 1956, the pills were tested on poor women in Rio Piédras, a housing project in San Juan, according to a historical review published in the Canadian Family Physician journal. The women didn’t know they were experimental.

“Women who stepped forward to describe side effects of nausea, dizziness, headaches, and blood clots were discounted as ‘unreliable historians,’” wrote Dr. Pamela Verma Liao and Dr. Janet Dollin. The clinical trials involved pills with much higher hormone levels than today’s contraceptives. Despite the substantial positive effect of the pill, its history is marked by a lack of consent, a lack of full disclosure, a lack of true informed choice, and a lack of clinically relevant research regarding risk,” the authors said. “These are the pill’s cautionary tales.”Angelina Zayas, a pastor at Grace and Peace Community Church that serves Chicago’s majority-Hispanic Belmont Cragin enclave, says many Puerto Rican women in her community are afraid to take COVID-19 vaccines, citing memories of the sterilizations and experiments.

“The biggest one is fear,” said Zayas, who is Puerto Rican. “That’s something that they remember, which affects their judgment in getting the vaccination. They’re like, ‘Well, how can I trust?’”Consuelo Hermosillo listens to a recording of her voice from a trial three decades ago.CLAUDIO ROCHAWho is ‘worthy’ of having children?History’s cautionary tales didn’t stop the injustices from happening again.

Allegations of unwanted hysterectomies performed on mostly Hispanic women at Georgia’s Irwin Detention Center surfaced last year. From 2006 to 2010, more than 100 incarcerated women in California prisons, mostly Black and Latina, underwent hysterectomies without their consent. The Center for Investigative Reporting broke the news in 2013. 

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Researchers weren’t surprised.”If certain conditions are in place, and these are conditions that often include marginalized populations in carceral spaces, with little oversight of the authorities, those types of conditions can be ripe for sterilization abuse,” said Stern, author of the book “Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America.”Essential health care: For the most vulnerable Americans, these clinics are trusted, accessible and vital to vaccine rollout“We are still very much living with … eugenic ideas of worth,” she said. “‘Who is worthy of having children, and who is worthy of raising children?’ Those are very much eugenic ideas that are alive and well, and they affect policy and harm certain people.”Under these policies, from 1907 through the 1970s, about 60,000 people underwent compulsory sterilizations nationwide.

Stern is studying a dataset of 30,000 sterilization records. She found that Latina patients in California were 59% more likely to be sterilized than non-Latinas. Hispanic men were 20% more likely to be sterilized than non-Hispanic men.The disproportionate operations, Stern said, were rooted in a racist ideology that certain attributes – criminal behavior, homosexuality, poor health, welfare usage or education levels – were hereditary and could be minimized through preventing procreation.An institutional evaluation of Andrea Garcia, 19, circa 1940, recommends sterilization. BACKSTAGE LIBRARY WORKS/CALIFORNIA STATE ARCHIVES Andrea Garcia, 19, from a Mexican family, was sterilized after being admitted into Pacific Colony, a psychiatric institution, for what evaluators called “truancy” and a low IQ test score.”Mentally deficient. Sex delinquent girl. Unfit home,” reads her evaluation, an archival copy of which is included in Stern’s analyses. “Father was illiterate; mother subnormal … one brother, four sisters thot to be subnormal.”At Pacific Colony, sterilization was a precondition for release – another coercive factor, Stern noted.

Sometimes people were released back to family members, sent to be helpers in households or perform menial labor jobs.Garcia’s mother took legal action but lost the case.Often, white women at the facility could escape the process, Stern said.”What you have is a system in place that is stratified in such a way that is most likely to bring in certain people. A young white girl with truancy could get away with it. Unlike Andrea Garcia. She didn’t have that luxury, a safety net, she didn’t have anything,” Stern said, calling the policies and practices “dehumanizing.”Women of color ‘robbed’ of agency, valueEspino, the historian who co-produced the No Mas Bebés documentary, said the abuses put women in unique difficulties. Some spouses didn’t trust that their wives were unwitting and thought they wanted the operations to be promiscuous. Factory worker Dolores Madrigal, the lead plaintiff in Madrigal v. Quilligan, said her husband took his anger out on her.

The sterilizations sent negative messages to women of color “that their mothering is not valued in the same way,” Espino said, “that they’re really only valued when they’re in the service of others: taking care of other people’s children or cooking for their masters. … Women of color’s bodies typically are valued when they’re used in the service of making other people wealthy.

The women, Espino said, were “robbed of their decision-making when it comes to the kind of family they want to have.”This man survived COVID-19: His treatment odyssey shows how complicated that can be.On a recent morning in California, Hermosillo, 71, took a break from babysitting and running the kitchens in her son’s four restaurants. Sitting on her porch in Venice, she reflected on the treatment of her and women like her. “I think they were doing it to lower the value of us Mexicans,” Hermosillo said. “That’s what I think.”She is grateful for her three children but dreamed of having more. As one of her fellow plaintiffs said, “Se me acabo la cancion” –”My song is finished.

Hermosillo’s older sisters had more children. As the family grew, she’d fall quiet when relatives asked when she would have more kids. She battled feelings of shame and embarrassment.“I hated baby showers,” she said. “Something happened to me.”As a girl in Mexico, she lived between her grandmother’s house and foster homes. She learned to be a mom at a very young age. As a teenager, she immigrated to the USA with her mother and spent her days looking after her baby brother.She didn’t tell her sisters or friends what happened at the hospital, sharing her story for the first time during the trial. She translated her love of babies and motherhood to working at the Women, Infants and Children (WIC) program for seven years, teaching breastfeeding classes to new moms.She wears a diamond necklace around her neck that she and her husband bought from one of her clients to help her with rent money.The struggle stays with her.“So many years passed,” she said, “but you don’t forget.”

Reach Nada Hassanein at nhassanein@usatoday.com or on Twitter @nhassanein_.

What questionable experiences have you had with medical professionals? What protections and regulations should be enforced or in place? What type of reparations should these women receive?

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5 Unethical Medical Experiments Brought Out of the Shadows of History

Prisoners and other vulnerable populations often bore the brunt of unethical medical experimentation.

By Allison Futterman
January 11, 2021 5:30 PM
Source: Discover Magazine

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Source: Discover Magazine
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(Credit: PanatFoto/Shutterstock)

Most people are aware of some of the heinous medical experiments of the past that violated human rights. Participation in these studies was either forced or coerced under false pretenses. Some of the most notorious examples include the experiments by the Nazis, the Tuskegee syphilis study, the Stanford Prison Experiment, and the CIA’s LSD studies.

But there are many other lesser-known experiments on vulnerable populations that have flown under the radar. Study subjects often didn’t — or couldn’t — give consent. Sometimes they were lured into participating with a promise of improved health or a small amount of compensation. Other times, details about the experiment were disclosed but the extent of risks involved weren’t.

This perhaps isn’t surprising, as doctors who conducted these experiments were representative of prevailing attitudes at the time of their work. But unfortunately, even after informed consent was introduced in the 1950s, disregard for the rights of certain populations continued. Some of these researchers’ work did result in scientific advances — but they came at the expense of harmful and painful procedures on unknowing subjects.

Here are five medical experiments of the past that you probably haven’t heard about. They illustrate just how far the ethical and legal guidepost, which emphasizes respect for human dignity above all else, has moved.

Learn more about Informed Consent

The Prison Doctor Who Did Testicular Transplants

From 1913 to 1951, eugenicist Leo Stanley was the chief surgeon at San Quentin State Prison, California’s oldest correctional institution. After performing vasectomies on prisoners, whom he recruited through promises of improved health and vigor, Stanley turned his attention to the emerging field of endocrinology, which involves the study of certain glands and the hormones they regulate. He believed the effects of aging and decreased hormones contributed to criminality, weak morality, and poor physical attributes. Transplanting the testicles of younger men into those who were older would restore masculinity, he thought.  

Stanley began by using the testicles of executed prisoners — but he ran into a supply shortage. He solved this by using the testicles of animals, including goats and deer. At first, he physically implanted the testicles directly into the inmates. But that had complications, so he switched to a new plan: He ground up the animal testicles into a paste, which he injected into prisoners’ abdomens. By the end of his time at San Quentin, Stanley did an estimated 10,000 testicular procedures.

The Oncologist Who Injected Cancer Cells Into Patients and Prisoners

During the 1950s and 1960s, Sloan-Kettering Institute oncologist Chester Southam conducted research to learn how people’s immune systems would react when exposed to cancer cells. In order to find out, he injected live HeLa cancer cells into patients, generally without their permission. When patient consent was given, details around the true nature of the experiment were often kept secret. Southam first experimented on terminally ill cancer patients, to whom he had easy access. The result of the injection was the growth of cancerous nodules, which led to metastasis in one person.

Next, Southam experimented on healthy subjects, which he felt would yield more accurate results. He recruited prisoners, and, perhaps not surprisingly, their healthier immune systems responded better than those of cancer patients. Eventually, Southam returned to infecting the sick and arranged to have patients at the Jewish Chronic Disease Hospital in Brooklyn, NY, injected with HeLa cells. But this time, there was resistance. Three doctors who were asked to participate in the experiment refused, resigned, and went public.

The scandalous newspaper headlines shocked the public, and legal proceedings were initiated against Southern. Some in the scientific and medical community condemned his experiments, while others supported him. Initially, Southam’s medical license was suspended for one year, but it was then reduced to a probation. His career continued to be illustrious, and he was subsequently elected president of the American Association for Cancer Research.

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The Aptly Named ‘Monster Study’

Pioneering speech pathologist Wendell Johnson suffered from severe stuttering that began early in his childhood. His own experience motivated his focus on finding the cause, and hopefully a cure, for stuttering. He theorized that stuttering in children could be impacted by external factors, such as negative reinforcement. In 1939, under Johnson’s supervision, graduate student Mary Tudor conducted a stuttering experiment, using 22 children at an Iowa orphanage. Half received positive reinforcement. But the other half were ridiculed and criticized for their speech, whether or not they actually stuttered. This resulted in a worsening of speech issues for the children who were given negative feedback.

The study was never published due to the multitude of ethical violations. According to The Washington Post, Tudor was remorseful about the damage caused by the experiment and returned to the orphanage to help the children with their speech. Despite his ethical mistakes, the Wendell Johnson Speech and Hearing Clinic at the University of Iowa bears Johnson’s name and is a nod to his contributions to the field.

The Dermatologist Who Used Prisoners As Guinea Pigs

One of the biggest breakthroughs in dermatology was the invention of Retin-A, a cream that can treat sun damage, wrinkles, and other skin conditions. Its success led to fortune and fame for co-inventor Albert Kligman, a dermatologist at the University of Pennsylvania. But Kligman is also known for his nefarious dermatology experiments on prisoners that began in 1951 and continued for around 20 years. He conducted his research on behalf of companies including DuPont and Johnson & Johnson.

Kligman’s work often left prisoners with pain and scars as he used them as study subjects in wound healing and exposed them to deodorants, foot powders, and more for chemical and cosmetic companies. Dow once enlisted Kligman to study the effects of dioxin, a chemical in Agent Orange, on 75 inmates at Pennsylvania’s Holmesburg Prison. The prisoners were paid a small amount for their participation but were not told about the potential side effects.about:blankabout:blank

In the University of Pennsylvania’s journal, Almanac, Kligman’s obituary focused on his medical advancements, awards, and philanthropy. There was no acknowledgement of his prison experiments. However, it did mention that as a “giant in the field,” he “also experienced his fair share of controversy.”

The Endocrinologist Who Irradiated Prisoners

When the Atomic Energy Commission wanted to know how radiation affected male reproductive function, they looked to endocrinologist Carl Heller. In a study involving Oregon State Penitentiary prisoners between 1963 and 1973, Heller designed a contraption that would radiate their testicles at varying amounts to see what effect it had, particularly on sperm production. The prisoners also were subjected to repeated biopsies and were required to undergo vasectomies once the experiments concluded.

Although study participants were paid, it raised ethical issues about the potential coercive nature of financial compensation to prison populations. The prisoners were informed about the risks of skin burns, but likely were not told about the possibility of significant pain, inflammation, and the small risk of testicular cancer.

Despite your doctors accolades what is their professional history? How do you feel about their history? Is there anything controversial in their history?

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Surgery, Mutilators of the Flesh

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Philippians 3:2, ESV: “Look out for the dogs, look out for the evildoers, look out for those who mutilate the flesh.”

According to Stanford Health Care, “According to the latest data from the National Center for Health Statistics, 48 million surgical inpatient procedures were performed in the United States in 2009.”

At some point during ones life surgery maybe suggested to you as a method of healing. As Christians or other believers of faith how does this reconcile with your faith / belief system. If you believe in God, have you given any thought about what the bible says about surgery and how one can obtain their healing: a true or different method of healing?

Indeed this bible verse gives us pause to think about the many ways and motives for mutilating the flesh. Wikipedia defines flesh mutilation as, Mutilation or maiming (from the Latin: mutilus) is cutting off or causing injury to a body part of a person so that the part of the body is permanently damaged, detached or disfigured. In fact many “medical” actions taken in the west today are riddled with profit of healing. Figures such as Jeff Bezos and Warren Buffet have been vocal regarding the cost of health care in America and the poor health care outcomes that ensue sometimes leading to death often leading to chronic (constant) disease for many people, which leaves the body in a constant state of disease leading to other illnesses such as (suggested) cancer. This method of “treatment” is very profitable for today’s medical professional in America leaving him or her with a perpetual patient while the patient along with insurance companies and tax payers, depending on the type of insurance, to foot the bill.

Perhaps this is why this bible verse warns us to be cautious of those who mutilate the flesh. The flesh has been mutilated for many reasons throughout history including as a rite of passage for those of a certain age in certain cultures. So, there are many means and methods by which we should be cautions of these mutilators of the flesh.

So, where is the healing that God promises us. Jesus indeed healed thousands if not more. Some where healed by word; some by a little spit; some by a little clay ….all by faith. The mature Christian knows that faith is not some illusive feeling, but is translated into action.

James 2:14-26, New King James Version

Faith Without Works Is Dead

14 What does it profit, my brethren, if someone says he has faith but does not have works? Can faith save him? 15 If a brother or sister is naked and destitute of daily food, 16 and one of you says to them, “Depart in peace, be warmed and filled,” but you do not give them the things which are needed for the body, what does it profit? 17 Thus also faith by itself, if it does not have works, is dead.

18 But someone will say, “You have faith, and I have works.” Show me your faith without [a]your works, and I will show you my faith by [b]my works. 19 You believe that there is one God. You do well. Even the demons believe—and tremble! 20 But do you want to know, O foolish man, that faith without works is [c]dead? 21 Was not Abraham our father justified by works when he offered Isaac his son on the altar? 22 Do you see that faith was working together with his works, and by works faith was made [d]perfect? 23 And the Scripture was fulfilled which says, “Abraham believed God, and it was [e]accounted to him for righteousness.” And he was called the friend of God. 24 You see then that a man is justified by works, and not by faith only.

25 Likewise, was not Rahab the harlot also justified by works when she received the messengers and sent them out another way?

26 For as the body without the spirit is dead, so faith without works is dead also.

We are reminded that God has give us all we need whether we find that in the power of healing foods or the power of ancient salt waters. There are many alternatives to “medications” and drugs as offered by the African state of Tanzania in the wake of COVID 19 (March 1, 2021 article on this site). We do not propose to have all the answers and invite you to share what you know and discover with us. However, we do believe that at the center of every healing is God. We do believe that your solution to healing should be a fact-based, well informed and researched solution not made in haste.

In fact Informed Consent (differ from state to state) is a law little know by many patients, which requires doctors to inform patients of all treatments available to them (which often do not include alternative medicines or treatments, which they maybe unaware of) and the results or expected outcomes of each treatment. Not just those that are mst profitable for the medical professional or organization.

What current diagnosis do you have? Why? What current treatment or medications / drugs are you taking? Why? What has been your health outcome? Why are people being diagnosed with terminal illnesses? Is it because the treatment can not produce positive outcomes and one should consider alternatives for a healing?

Share your comments with the community by posting them below. Share the wealth of health with your friends and family by sharing this article with 3 people today. As always you are the best part of what we do. Keep sharing!

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Meet the company offering a chance at immortality for $200,000

CNBC: THE FUTURE OF USCNBC: THE FUTURE OF US
Source: CNBC
PUBLISHED TUE, APR 26 20161:01 PM EDTUPDATED FRI, APR 29 201612:17 PM EDT
Zack Guzman@ZGUZ

In the desert climate of Scottsdale, Arizona, rest 147 brains and bodies, all frozen in liquid nitrogen with the goal of being revived one day.

It’s not science fiction — to some it might not even be science — yet thousands of people around the world have put their trust, lives and fortunes into the promise of cryonics, the practice of preserving a body with antifreeze shortly after death in hopes future medicine might be able to bring the deceased back.

“If you think back half a century or so, if somebody stopped breathing and their heart stopped beating we would’ve checked them and said they’re dead,” said Max More, CEO of the Scottsdale-based Alcor. “Our view is that when we call someone dead it’s a bit of an arbitrary line. In fact they are in need of a rescue.”

That “rescue” begins the moment a doctor declares a patient dead. Alcor’s team then prepares an ice bath and begins administering 16 medications and variations of antifreeze until the patient’s temperature drops to near freezing.

Alcor CEO Max More poses in front of the dewars that house his 147 cryopreserved patients.
Source: CNBC
Shidonna Raven Garden and Cook

Alcor CEO Max More poses in front of the dewars that house his 147 cryopreserved patients.Qin Chen | CNBC

“The critical thing is how fast we get to someone and how quickly we start the cooling process,” More said. In order to ensure that can happen, Alcor stations equipped teams in the U.K., Canada and Germany and offers members a $10,000 incentive to legally die in Scottsdale, where the record for getting a patient cooled down and prepped for an operation is 35 minutes.

Next, a contracted surgeon removes a patient’s head if the member selected Alcor’s “Neuro” option, as it’s euphemistically called, in hopes that a new body can be grown with a member’s DNA once it comes time to be thawed out. It’s also the much cheaper route. At a price tag of $80,000, it’s less than half the cost of preserving your whole body. “That requires a minimum of $200,000, which isn’t as much as it sounds, because most people pay with life insurance,” More said.

In fact, such a business model is pretty consistent in the nonprofit cryonics community. Michigan-based Cryonics Institute offers a similar payment structure, albeit at the more affordable cost of just $28,000 for whole-body preservation. Which begs the question: Why the price discrepancy?

“We’ve been very conservative in the way we plan the financing,” More said. “Of that $200,000, about $115,000 of it goes into the patient care trust fund,” which is meant to cover eventual costs and is controlled by a board of trustees (a certain number of which is required to have loved ones currently in cryopreservation). More says the trust currently boasts a total of over $10 million, which is supported by Alcor’s most recent nonprofit 990 filings.

Who is doing this?

When Morecame to the U.S. in 1986 from Britainto train at Alcor, it was run by volunteers and he signed up as Alcor’s 67th member. Since then, the company has hired a full-time staff of eight employees, boosted its membership to more than 1,000, and is looking into doubling the size of its patient care bay.

And while Alcor said its membership includes billionaire investor Peter Thiel and Google Chief Engineer Ray Kurzweil, high-profile names have led to scrutiny in the past. The company found itself at the center of a media firestorm after a former employee raised allegations that Alcor mistreated the remains of baseball great Ted Williams. The company’s subsequent defamation suit, which challenged the ex-employee’s account, was dismissed but Alcor has sought to reinstate it. Still, Alcor’s membership continues to grow, and it’s not all due to billionaires.

Elaine Walker, 47, is a single mother and part-time college instructor at Scottsdale Community College who signed up to have her head frozen at Alcor nine years ago, after discovering cryonics in an online newsgroup back in the pre-Google days of the 1990s.

Alcor member Elaine Walker plans to be cryopreserved after death.
Source: CNBC
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Alcor member Elaine Walker plans to be cryopreserved after death.Qin Chen | CNBC

Having just come out of college, she initially saw the cost of Alcor’s services as prohibitive, until the company allowed front-funding requirements with life insurance policies. All that was left after $14 a month in life insurance payments was worrying about the nearly $600 in Alcor’s annual membership fees, which she covered by canceling her cellphone plan.

“I have a cellphone now, but at the time it’s all I had to do,” she said. Nine years later, she still worries about saving for the eternal future but she’s less concerned about what it might look like. “I actually spend zero time worrying about that,” she said. “It’s not that I want to be alive again so I can live out some lifetime or do something I didn’t get a chance to do. It’s really just because I want to see what happens.”

When asked, she said she would even prefer coming back as a cyborg slave laborer on a distant planet to dying on Earth. “I mean unless it’s extremely physically painful or something, and I’ll ask the cyborg next to me, ‘what happened, did we make it to Mars?’”Why AI won’t wipe out humanity … yet

Can cryonics work?

In the eyes of the law, Alcor is under no commitment to deliver life after death. In fact, after legal death has been declared the government views Alcor’s 147 “patients” as nothing more than bodies and organs donated to science under the Uniform Anatomical Gift Act, which means even though Alcor signs a contract with its members saying it will deliver its cryonics services, it is under loose obligations to do so.

“It would be a very bad idea not to follow through,” More told CNBC. “But we’re actually very aggressive in following through — we will if necessary go to court to get possession of our patients, or file an injunction to stop an autopsy for instance, and we’ve done that many times.”

But apart from the legal hurdles of suing those who try to interfere in the handling of a patient, there are laws of science that cryonics must face.

As Michio Kaku, futurist and professor of theoretical physics at the City College of New York said: “When people ask me a scientific question I have to give them results that are testable, that are reproducible and falsifiable. Unfortunately cryonics offers none of the above.” While advocates of cryonics point to successful in-vitro fertilization of frozen embryos and experiments with simpler animals, Kaku points to the lacking human evidence.

Others note the inherent complexity and lack of current scientific understanding of the human brain. Pointing to the existence of over 100 billion neurons and the minute fraction so far mapped by science, Columbia neuroscientist Dr. Ken Miller likened cryonics to “selling tickets to a ride you can’t go on.”

But in the eyes of More, Alcor isn’t selling hope. It’s a chance. And to be fair, before cryonics posed these questions, scientific evidence was no more a prerequisite than hope for believing in an afterlife. For members like Walker and others, that’s enough to pay for.

“I want to see the future, so this is what I’m excited about,” she said. The cost is very small considering I have that hope.”

Correction: This story was revised to correct the spelling to More in one reference.

Some of the very things we were watching on the movie screen a decade or so ago no seem to be coming true. Let’s look at what this article states again (see below). Are participants fully aware of this? Do you think they would make different choices if they did? Should informed consent apply here if it doesn’t already? What are the health implications? Do they know if they can revive you not to mention if they will? Is this another means of conducting an unethical experiment without fully disclosing the information to participants.

In the eyes of the law, Alcor is under no commitment to deliver life after death. In fact, after legal death has been declared the government views Alcor’s 147 “patients” as nothing more than bodies and organs donated to science under the Uniform Anatomical Gift Act, which means even though Alcor signs a contract with its members saying it will deliver its cryonics services, it is under loose obligations to do so.

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Immigrant Women File Lawsuit Against ICE And Georgia Doctor Alleging Medical Abuse

WOMEN 12/22/2020 03:24 pm ET 
Updated Dec 23, 2020
Source: Huff Post

More than 30 women say they were subject to non-consensual invasive medical procedures.

headshot
By Rowaida Abdelaziz
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We have people who love us and are waiting on us, is a comment we have often heard from those who have suffered medical abuse, negligence and violence while under forced medical care. After being given a cocktail of medications this particular female patient woke stripped down to her undergarments in the middle of the night with no answers or explanations for medical professionals who seem unconcerned and remove from her situation.

By Rowaida Abdelaziz

More than 30 women filed a class-action lawsuit on Monday against a Georgia gynecologist and the U.S. Immigration and Customs Enforcement agency, alleging they were subject to medical abuse and retaliation while in ICE custody.

The women, all of whom were detained at Irwin County Detention Center in Ocilla, Georgia, allege they underwent non-consensual invasive procedures ― including hysterectomies, birth control shots, and medically unindicated gynecological procedures that amounted to sexual assault ― at the hands of Dr. Mahendra Amin, who was working as an obstetrician-gynecologist authorized by ICE to provide medical services to detainees. The immigrant women also accuse ICE and LaSalle Corrections employees of retaliating against them for speaking out against Amin. (LaSalle Corrections, a private prison company, operates the detention center.)

Amin’s lawyer, who did not respond to HuffPost’s request for comment, has previously denied any wrongdoing on behalf of his client. An ICE spokesperson told HuffPost that they could not comment on pending litigation but that the agency was “fully cooperating” with the investigation by the Department of Homeland Security’s Office of Inspector General.

The women filed the 160-page complaint in the U.S. District Court for the Middle District of Georgia with the help of several organizations and law firms including the National Immigration Project of the National Lawyers Guild, Atlanta’s Dreyer Sterling, and New York’s Morningside Heights Legal Services.

“We are seeking an immediate end to the egregious retaliation against the women who spoke out against the abuse, release of the women who have suffered medical abuse, and compensation for the harms that the survivors suffered,” said Azadeh Shahshahani, legal and advocacy director at Atlanta-based Project South and co-counsel on the lawsuit. “It is high time for this facility rife with human rights violations to be shut down and for ICE and LaSalle to be held accountable.”

News of ICE detainees receiving unwanted and unnecessary hysterectomies first came out in September after a nurse blew the whistle. More detained women have since spoken out to say they endured medical neglect or were forced to undergo surgeries performed by Amin that they never approved of. An independent inquiry by a team of medical experts in October uncovered a troubling pattern of incorrect diagnoses and failure to secure informed consent for medical surgeries on detainees at the Irwin County Detention Center.

The immigrant women included in Monday’s suit came from a range of countries including Mexico, Bolivia, Senegal and Kenya. Some of the women have since been released while others have been deported. Last month, the Trump administration agreed to freeze the deportations of the women who alleged abuse at the Georgia facility.

In the complaint, women say they faced a range of retaliatory actions after speaking out against Amin, including physical assault, solitary confinement, loss of money from their commissary accounts, limited access to phones, and delayed delivery of medications and medical records. 

At a virtual press conference on Tuesday hosted by the National Immigration Project of the National Lawyers Guild, one of the accounts of abuse came from Elizabeth, a 21-year-old detainee who was born in Guadalajara, Mexico, and has lived in the U.S. since she was brought to the country at 8 years old. (She is being identified solely by her middle name due to sensitive details of her story.) Elizabeth alleged that she did not receive a six-week postpartum checkup after giving birth and that she sought medical help after experiencing pain. ICE sent her to Amin.

Upon arrival at her appointment, Elizabeth said that she was handcuffed and shackled at her ankles and waist. She alleged that Amin conducted a vaginal ultrasound and gave her a Depo-Provera birth control shot without explaining the procedures. She said that she only found out what the shot entailed after speaking to another immigrant who had received the same shot and that she did not consent to receiving the birth control.

“I just feel like I have no control over my body anymore,” Elizabeth said.

At the doctor’s office, she said she was forced to sign paperwork that she never had the chance to read. And following the visit, she said she bled for two months, gained 15 pounds and was frequently depressed.

“The people that we trust, the medical staff that is here, we can’t trust them anymore,” she said. “We don’t know what they are doing with our bodies.”

Elizabeth said she hopes to receive justice for the medical mistreatment and to be released from the detention center while she pursues her immigration case to stay in the U.S. The young mother couldn’t celebrate Thanksgiving and will likely miss out on celebrating Christmas with her newborn daughter. 

“We have kids. We have people that love us that are waiting for us,” she said.

Out of greed or wrath many so called medical professionals commit atrocities to ‘patients’ often never explaining what they have done to their bodies. These people often suffer years with unexplained illnesses. These ‘medical professionals’ following them with no more permission than they had the first time. Looking for bodies they can commit their atrocities to, not to mention the required informed consent — by true medical professionals. They often attempt to cover their tracks by using prisoners, immigrants, fraud, mis-diagnosis, mis-informing, harassing, post voluntary election into medical trails along with many other methods and means. What should be done? What other populations do thee doctors exploit? What other methods and means have you seen?

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NY doctor charged in serial sexual assaults on patients

A former New York gynecologist accused of sexually abusing dozens of patients, including the wife of former presidential candidate Andrew Yang, now faces federal charges

By LARRY NEUMEISTER and JIM MUSTIAN
Source: Associated Press / ABC News
September 9, 2020, 8:04 PM

NOTIFIED: Jan. 8, 2021
Source: Associated Press / ABC News
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NOTIFIED: Jan. 8, 2021

NEW YORK — A former New York gynecologist accused of sexually abusing dozens of patients, including the wife of former Democratic presidential candidate Andrew Yang, was charged Wednesday with attacking girls and women for nearly two decades using the cover of medical examinations.

Prosecutors described the doctor, Robert A. Hadden, 62, as a “predator in a white coat,” accusing him of singling out young and unsuspecting victims, including a young girl he’d delivered at birth.

The federal charges will be the second time Hadden is prosecuted over alleged abuse of patients. He surrendered his medical license in a 2016 plea deal with Manhattan District Attorney Cyrus R. Vance Jr. that didn’t require him to serve any jail time.

Outrage over that light punishment built as the #MeToo movement gained momentum and more women told their stories publicly, including Evelyn Yang, who earlier this year told CNN that Hadden assaulted her in 2012, including when she was seven months pregnant.

Hadden was arrested at his home in Englewood, New Jersey, a community 10 miles outside Manhattan.

He pleaded not guilty at a court hearing Wednesday evening to six counts of inducing others to travel to engage in illegal sex acts and was ordered released on $1 million bail over the objections of a prosecutor who said he should be held as a threat to flee.

Isabelle Kirshner, Hadden’s attorney, declined comment.

One of the women who says she was abused by Hadden spoke at the hearing, and unsuccessfully urged the judge to hold him pending trial.

“I don’t think he deserves any opportunity to prevent justice in whatever means he could potentially do that,” Jessica Chambers said. “He has injured many, many, many women and he has to be held accountable for that.”

The Associated Press generally withholds the names of sexual abuse victims from stories unless they have decided to tell their stories publicly, which Chambers and Evelyn Yang have done.

Wednesday’s charges represented the second recent instance when federal prosecutors in Manhattan sought to revive a concluded sex abuse prosecution criticized as lenient. Financier Jeffrey Epstein faced federal sex trafficking charges last year after a Florida state prosecution and accompanying federal non-prosecution agreement was criticized as lax. He then killed himself in a federal jail.

Audrey Strauss, the acting U.S. attorney in Manhattan, said Hadden, had “inappropriately touched, squeezed and even licked his victims” and subjected a young girl he’d delivered as a baby “to the same sort of sexual abuse he inflicted on his adult victims.”

“He used the cover of conducting medical examinations to engage in sexual abuse that he passed off as normal and medically necessary,” Strauss said. “His conduct was neither normal nor medically necessary.”

The indictment said Hadden sexually abused dozens of patients, including multiple minors, at his medical offices and Manhattan hospitals from 1993 through at least 2012 while he worked as a medical doctor at Columbia University and at New York Presbyterian Hospital.

The indictment detailed what it described as the abuse of one minor female and five adult women who traveled from out of state to see Hadden. It said Hadden invited his victims to meet with him alone in his office, where he frequently raised “inappropriate and irrelevant sexual topics” and asked women questions about their own sexual activities.

Strauss and William F. Sweeney Jr., the head of New York’s FBI office, urged victims who had not reported their abuse to call the FBI.

Sweeney called the alleged crimes “just outrageous” and said Hadden manipulated dozens of women including several minors who had “no understanding of what to expect, what was normal and what was not.”

After Hadden’s arrest, Andrew Yang tweeted: “So proud of @EvelynYang – this guy belongs behind bars. Thank you to everyone who supported her.”

Previously, Evelyn Yang had called Hadden’s earlier punishment under the state plea deal, under which he admitted to forcible touching and one count of a criminal sex act, a “slap on the wrist.”

Hadden faces a civil lawsuit brought by more than two dozen accusers who say he groped and molested them.

Danny Frost, a spokesman for Vance, said state prosecutors provided “substantial assistance” leading to federal indictment. The Manhattan District Attorney’s Office is still conducting its own “intensely active” investigation into “potential failures by Dr. Hadden’s employer and hospital to disclose additional incidents of abuse to our office and to regulators when required.”

Marissa Hoechstetter, another Hadden accuser, has said Vance’s office misled her about the statute of limitations in Hadden’s case and was already negotiating the plea deal when she was still talking to prosecutors about testifying at a potential trial.

The federal indictment Wednesday “only puts into high relief the betrayal I and his other victims experienced by the Manhattan DA,” she said.

“I hope that through the course of this, the world will finally see the full extent of Hadden’s decades of sexual abuse and the institutional cowardice that protected and enabled him for so long,” Hoechstetter said in a statement to The Associated Press. “He and his enablers must be held accountable if we are to make change in a system that harms those it is meant to protect.”

Vance has defended his office’s handling of the case, saying his “career prosecutors do not shrink from the challenge of prosecuting powerful men.”

“Because a conviction is never a guaranteed outcome in a criminal trial, our primary concern was holding him accountable and making sure he could never do this again – which is why we insisted on a felony conviction and permanent surrender of his medical license,” Vance said in a statement.

———

Associated Press Writer Tom Hays contributed to this story.

Would you recognize health care fraud if you see it? How can health care fraud lead to sexual assault? What would you like to see happen to the people who use the mask of health care to commit sexual assault? How can new technologies in neuroscience involve those who sexual assault? How can they use these new technologies to assault? Do these doctors get informed consent? Are you apart of a neurological experiment and don’t even know it? What roles do social media platforms like Facebook play in these new technologies. Many have reported being apart of medical experiments without being made aware: the Tuskegee men for example. Facebook has opened a neuroscience center focused on marketing.

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Do it yourself? When the researcher becomes the subject

Poldrack in scanner
Stanford psychologist Russell Poldrack, shown here in his 105th MRI scanning session during an 18-month experiment, is one of a number of researchers who are enlisting as subjects in their own studies. TIM LAUMANN
Source: Science Magazine
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By Esther LandhuisDec. 5, 2016 , 12:30 PM
Source: Science Magazine
Photos Source: Science Magazine

Some scientists analyze fruit flies. Others use zebrafish. Many conduct studies with mice. But occasionally, researchers choose to experiment on a different animal: themselves. Consider the medical officer who in the early 1800s fed himself spoiled sausage to determine the source of foodborne botulism. Or the physician who in 1929 performed the world’s first cardiac catheterization on himself, and the young doctor who in 1984 guzzled Helicobacter pylori broth to prove that the bacterium causes ulcers. The latter two went on to win Nobel Prizes, but others haven’t been as fortunate. During the Spanish–American War, when yellow fever was killing thousands of U.S. soldiers, physician Jesse Lazear died after intentionally exposing himself to infected mosquitoes.

Medical martyrdom is rarer these days, in part due to increased regulation of human subject research after World War II, and fewer researchers dying for their work can only be a good thing. Nonetheless, autoexperimentation continues. The access to the subject is matchless, and the allure of big data and personalized medicine seems to be some nudging self-experimenters toward new types of studies. However, the regulatory environment remains somewhat vague, leaving it up to researchers to weigh practicality against ethical considerations. But if care and diligence accompany the appetite for adventure, scientists can responsibly conduct self-experimentation studies that help advance science—and potentially offer some fun and personal benefit to boot.

Balancing ease with ethics

For scientists whose work isn’t particularly risky, it’s hard to beat a prime motivation for self-experimentation: convenience. “It’s easy to draw your own blood and analyze it,” says Laura Stark, a bioethics historian at Vanderbilt University in Nashville. “You don’t have to worry about someone suing you or deciding you can’t use their sample.”

That was a key factor when Lawrence David, a Ph.D. student at the Massachusetts Institute of Technology at the time, and his adviser, bioengineer Eric Alm, sought to monitor how daily activities influenced the human gut and oral microbiomes over the course of a year. They needed to determine feasibility limits—for example, how frequently samples could be collected and how many variables could be measured. When the researchers couldn’t immediately find participants, they decided to enroll themselves. “We thought that by participating, we’d gain firsthand understanding of those limits,” says David, now an assistant professor of molecular genetics and microbiology at Duke University in Durham, North Carolina.

Each day, the two researchers saved spit samples and pooped into sterile bags. They used an iPad app to log their weight and everything they did and ate. Several months into the study, David went to Bangkok for a few weeks but stuck with the regimen, shipping home 3 to 5 pounds of stool on dry ice. That commitment eventually paid off when the results were published.

Russell Poldrack, a psychologist at Stanford University in Palo Alto, California, also had an ambitious study plan that required more than what the average participant would tolerate. That’s what led him to climb into an MRI machine every Tuesday and Thursday morning for 18 months to get his brain scanned. The idea started simmering years before, when Poldrack’s studies to understand psychiatric disorders stalled because they lacked a good control for normal brain function variability over time. At some point, he recalls, while he was directing the Imaging Research Center at the University of Texas (UT) at Austin, artist-in-residence Laurie Frick “really started pushing me, saying, ‘You’ve got this MRI scanner. Why aren’t you getting in there and scanning yourself?’”

While Poldrack was mulling over this possibility, Stanford geneticist Michael Snyder published a 2012 paper describing an “integrative Personal Omics Profile” of a 54-year-old male volunteer—himself. Snyder’s genome was sequenced and analyzed, and over 14 months, the research team made more than 3 billion measurements of his blood, saliva, mucus, urine, and feces. During the study—conducted as a proof of principle and to learn what a baseline “healthy” state looks like—Snyder discovered that he was genetically at risk for type 2 diabetes. With that information and the accompanying data, he was able to investigate biological pathways that kicked in as he developed signs of disease, which could have implications beyond Snyder’s individual health. Seeing Snyder’s work made Poldrack think that his crazy brain study might “not just be a goofy boutique project; it could actually have some scientific impact.”

He was right: His 18-month ordeal produced the most detailed map of functional brain connectivity in a single person to date.

Despite the potential advantages of using oneself as a subject, scientists contemplating this approach should consider research ethics guidelines. In the United States, the National Institutes of Health enacted policies in 1954 that restrict the use of employees as research subjects. The National Research Act, passed by Congress in 1974, requires research involving human subjects to be vetted by an institutional review board (IRB). Current rules, which date from 1981, outline additional protections for vulnerable groups, including pregnant women, children, and prisoners. U.S. federal law does not, however, explicitly address self-experimentation by a scientist or physician, says Jonathan Moreno, a bioethicist at the University of Pennsylvania. As Stark explains, it is “a blind spot in the current human subjects regulations.” That means that, at least for now, it is up to researchers to decide whether they’re comfortable experimenting on themselves and whether they need to seek IRB approval.

Conducting research in this vague regulatory environment can create confusion, even when researchers do everything they can to make sure they’re proceeding according to regulations and requirements. Before Poldrack started his brain study, for example, he submitted a proposal to the IRB at UT Austin, where he worked at the time. The board said that it did not consider his project to be human subjects research and therefore it did not require approval, so Poldrack got started collecting his scans without worrying about any further paperwork.

About 6 months after Poldrack started collecting data, however, the situation became more complicated. Researchers at Washington University School of Medicine in St. Louis learned of the study and wanted to use some of Poldrack’s data. When they checked with their IRB to see whether a formal protocol was required, they hoped the IRB would say it was unnecessary. After all, it was data being collected at a different institution that hadn’t required IRB approval—“essentially just a data transfer from our point of view,” says M.D.-Ph.D. student Tim Laumann, one of the researchers interested in accessing the data. However, the Washington University IRB did require a protocol to be written and approved—a process that took about a month even when expedited, Laumann says.

Looking back, Poldrack suspects that things could have gone more smoothly if he had gotten IRB approval from his institution to begin with. “It would have made data sharing much easier because the data would not have been living in an ethical gray zone”—although, he adds, other aspects of the study, such as the fact the data cannot be de-identified, “might also have raised issues even with IRB approval.” In the absence of hard-and-fast rules for self-experimentation, researchers wishing to study themselves should trust their best judgment while allowing for hiccups that could arise in this less-chartered realm.

The power of doing it yourself

Beyond administrative challenges, self-experimentation studies can raise questions about whether analyses of just a few individuals are scientifically valid. Self-monitoring experiments are not randomized or blinded like traditional human studies, and the experimenter’s personal involvement and motivations could make the research seem less objective.

Despite these concerns and caveats, there are scenarios where self-experimentation may be not only acceptable but optimal. Studies such as Poldrack’s, which aim to correlate hard-to-describe personal experiences such as mood or emotion with concrete measurements, for example, are among them because the researchers have particular expertise that makes them ideal subjects. Researchers “know the categories used to describe feelings and side effects and can articulate them in a way that translates easily into scientific language,” Stark says. Self-experimentation, therefore, can offer a way to calibrate tools and technologies that are otherwise hampered by relying on an individual’s subjective experience.

And for University of California, San Francisco, neuroscientist Adam Gazzaley, who develops video games to help improve brain function, the small sample size is exactly what he wants. The video games automatically adjust their difficulty based on the user’s performance, creating a personalized digital therapy, which is a key part of his lab’s effort to shift “away from just focusing on large populations and focusing more on the individual, the n of 1,” Gazzaley says. “We’re looking to understand more about how to make meaningful statements about data from a single person.”

<p>Adam Gazzaley underwent various measurements, including EEGs, as a participant in his own studies.</p>
Adam Gazzaley underwent various measurements, including EEGs, as a participant in his own studies. JO GAZZALEY
Source: Science Magazine
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Every once in a while, when Gazzaley gives talks about the project, someone from the audience would ask him whether he played the games himself. His answer was “no” until the summer of 2015, when Gazzaley decided to put his time where his mouth is and became a research participant. For 2 months he played an hour of Body Brain Trainer, a physical and cognitive fitness game, three mornings a week. He also did 30 minutes of a meditation game called Meditrain on weeknight evenings, and for 3 weeks he played the newest game, Neurodrummer, which aims to improve cognition through rhythm training. He also had to get numerous measurements taken via saliva and blood samples, MRIs, EEGs, sleep tracking, heart rate monitoring, and more.

“Playing games I helped invent and being in studies I helped design and validate, but doing it from the perspective of a participant, was really helpful,” Gazzaley says. Experiencing firsthand the challenges of compliance, especially for something “not as quick as a pill,” has inspired Gazzaley to develop ways to not only push people to work harder during the game but also to sustain motivation over the long haul.

As for whether he plans to publish the data collected on himself, he says he might play the games again, perhaps annually, “to get a more longitudinal view.” For now, though, the personal reasons for self-experimentation could be just as strong as the scientific motivation. Now in his late 40s, Gazzaley says he is “approaching the age range of the adults we treat in some of our older studies. We know middle-aged folks have declining cognitive control. This seemed a great way for me to try and get out in front of it.”

Regardless of why scientists engage in self-experimentation, they should be transparent, making a public statement—perhaps a paragraph in the manuscript—explaining why they’re doing a study on themselves and what they hope to learn by conducting the research this way, Moreno says. “It says the researcher isn’t just using patients as guinea pigs.” Time will tell whether these types of studies establish worth that goes beyond provocative one-offs. Then again, with certain research questions, he adds, “if you don’t give it a shot, you may never know.”

doi:10.1126/science.caredit.a1600160

Esther Landhuis

Esther Landhuis is a freelance science journalist based in the San Francisco Bay area.

Why don’t more doctors and scientist use themselves as subjects since they have confidence in their trails? Why don’t patients know about informed consent? Why don’t doctors and scientist get it? Why are clinical trials infamous for their fines? Are unethical medical experiments really a thing of the past? Why are there so many modern day instances of unethical medical experiments?

Share your comments with the community by posting them below. Share the wealth of health with your friends and family by sharing this article with 3 people today. As always you are the best part of what we do. Keep sharing!

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You Might Be in a Medical Experiment and Not Even Know It

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By Alice Dreger, January 31, 2017 1:34 PM
Source: Discover Magazine
Feature Photo Source: Unsplash, Hush Naidoo 

In the long view, modern history is the story of increasing rights of control over your body – for instance, in matters of reproduction, sex, where you live and whom you marry. Medical experimentation is supposed to be following the same historical trend – increasing rights of autonomy for those whose bodies are used for research.

Indeed, the Nuremberg Code, the founding document of modern medical research ethics developed after the Second World War in response to Nazi medical experiments, stated unequivocally that the voluntary, informed consent of the human subject is essential. Every research ethics code since then has incorporated this most fundamental principle. Exceptions to this rule are supposed to be truly exceptional.

Yet today, more and more medical experimenters in the United States appear to circumvent getting the voluntary, informed consent of those whose bodies are being used for research. What’s more, rather than fighting this retrograde trend, some of the most powerful actors in medical research are defending it as necessary to medical progress.about:blankabout:blank

A few years ago, I fell in with a growing group of professionals in medicine and allied fields such as bioethics who have mobilised to defend the right to informed consent in medical experimentation. As a historian of medicine, I had worked since 1996 with intersex rights activists on improving care for children born with bodies in between the male and female types. In 2009, colleagues alerted me that a group of parents judged ‘at risk’ of having a child born with a particular genetic intersex condition appeared to be unwitting subjects in a medical experiment.

A major researcher and physician was promoting the prenatal use of a drug (dexamethasone) aimed at preventing intersex development. Targeting would-be parents who knew they had this condition running in their families, the researcher told them that the ‘treatment’ had been ‘found safe for mother and child’.

In fact, the US Food and Drug Administration (FDA) has not approved dexamethasone for preventing intersex development, much less found it ‘safe’ for this use. Indeed, the FDA has noted dexamethasone causes harm in foetal animals exposed to it. No one seems to have told the parents that this ‘treatment’ had not gone through anything like the normal route of drug approval: there has been no animal modelling of this use, no blinded control trial for effectiveness, and no long-term prospective safety trials in the US, where thousands of foetuses appear to have been exposed.

Shockingly, at the same time that this researcher was pushing the ‘treatment’ as ‘safe’, she was obtaining grants from the US National Institutes of Health (NIH) to use the same families in retrospective studies to see if it had been safe. A Swedish research group has recently confirmed – through fully consented, prospective studies – that this drug use can cause brain damage in the children exposed prenatally.

As I sought allies in defending the rights of these families, I discovered that, while this was an especially egregious case of failure to obtain informed consent to what amounted to a medical experiment, the lapse was not unique. Public Citizen’s Health Research Group, a Washington-based NGO, has been leading the work in tracking cases where medical researchers fail in their obligations to obtain informed consent.about:blankabout:blank

Recently, Public Citizen, together with the American Medical Student Association, sounded an alarm about two clinical trials, one called iCOMPARE, the other FIRST. In these studies, researchers extended the working hours of newly trained physicians to see if these physicians and their patients were better or worse off with the most inexperienced doctors working longer, more tiring shifts.

The young doctors used in these studies were not given the option of not participating. If their residency programmes participated, they were in. More concerning, their patients were never informed that they were experimental subjects, even though a primary research goal was to see if patients treated by residents working longer shifts would experience higher rates of harm.

Some studies tracked by Public Citizen reveal downright bizarre ethical mistakes. A recent study funded by the US Department of Health and Human Services, led by a US Department of Veterans Affairs researcher, sought to determine whether, if brain-dead kidney donors’ bodies were cooled after brain death, living recipients of the transplanted kidneys did better. The researchers decided they didn’t need to get voluntary consent to the experiment from the living kidney recipients. They simply maintained the dead donors were the experimental subjects.

The largest contemporary fight over failure to obtain informed consent has been over the Surfactant Positive Airway Pressure and Pulse Oximetry Trial (or SUPPORT). This was a large NIH-funded study meant to determine, in part, whether higher or lower levels of oxygen after birth provided very premature babies with benefit or harm. The consent forms for this study did not inform the parents that the experiment’s purpose was to see if, by being randomly assigned to one of two experimental oxygen ranges, babies end up more likely to be blind, neurologically damaged or die.

Most parents also weren’t informed that the researchers would use experimental measuring devices meant to ‘blind’ professional caregivers to the babies’ real oxygen levels to try to make the study more rigorous. Researchers told many parents that the study involved no special risks because all the procedures in the research were supposedly standard of care. This was a demonstrably untrue claim.

In this case, the US Office for Human Research Protections (OHRP) – an agency meant to protect the rights of people in federally funded research – agreed with Public Citizen and an allied group of more than 40 of us in medicine and bioethics that the informed consent for this trial was seriously inadequate. But in a series of emails meant to stay private, top NIH officials pressured the OHRP to back off its criticisms. OHRP is supposed to oversee NIH’s work, not the other way around!

NIH leaders also partnered with the editor of The New England Journal of Medicineto publicly defend this study. The journal’s editor-in-chief tried actively to limit the ability of us critics to respond. Meanwhile, the parents were never officially informed of what happened to their babies.

Those defending these troubling studies often argue that elaborate consent procedures can get in the way of obtaining important scientific results. They say that subjects might encounter the risks of the experiment even in ‘normal’ patient care, so we might as well engage them in studies without scaring them off through frightening research consent forms.

It is true that the current research ethics system in the US is cumbersome, inefficient and dysfunctional. Researchers often find themselves confused and frustrated by the bureaucracies of research ethics systems.

But that is no excuse not to vigorously maintain the first principle of the Nuremberg Code: the voluntary consent of the subject is essential. We can’t afford the risk to medical research that sloppy ethics entail; when the public finds out about the circumvention of informed consent – as in the case of the infamous US Public Health Service syphilis study at Tuskegee – the damage to the integrity and authority of the medical research community is inevitably significant and long-lasting.about:blank

The tenets of the Nuremberg Code were not meant only for Nazis. If Nazis presented the only danger to people being used for medical experiments, eliminating the Nazis would have solved our problems. The Nuremberg Code was written to guide all of us, because good intentions are not enough.

This article was originally published at Aeon and has been republished under Creative Commons.

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