What it’s like to be a medical research subject
Twin sisters share their experiences as NIH case study volunteers
When twins Lisa and Michelle Hytner volunteered for a medical case study at the National Institute of Health, they thought it would help shed some light on a reproductive disorder that was affecting only Michelle.
Instead, the study was traumatizing for Michelle. She dropped out after she felt NIH doctors and researchers violated her privacy. Lisa, however, had a more positive experience and remains a patient in the study.
When the twins were around 11, their mother became concerned about Michelle’s abnormal puberty stage and Lisa’s significantly slower growth rate.
“I had trouble learning different motor tests. Like how to do a somersault and my sister picked it up like that,” Lisa said.
Identical twins form in one egg, and share matching chromosomes, says Scientific American.Therefore, their genomes- the makeup of genes that form a person’s genetics- are exactly the same.
In spite of this, one person in an identical pair may experience different health issues than his or her twin. An example of this anomaly are Lisa and Michelle’s uncorrelated medical patterns.
Geneticist Carl Bruder of the University of Alabama led the 2008 twin research featured in Scientific American. The study involved 19 pairs of adult identical twins. Bruder concluded that deviating genomes in a pair of identical twins may actually be a “natural occurrence”.
He told Scientific American journalist Anne Casselman, “I believe that the genome that you’re born with is not the genome that you die with.”
These findings may help people understand that identical twins are individually unique.
While growing up, Michelle said her and Lisa struggled to be recognized as “separate entities”.
“In high school, people used to lump us together. We were always the ‘Hytner twins,’” said Michelle.
Their mother even worried that Lisa and Michelle might have the same ailments. She suggested the NIH in hopes that the study would provide more information than a standard doctor’s visit.
After Michelle and Lisa agreed to the case study, the commitment required hours of driving per week from Virginia to the NIH campus in Washington D.C.. The campus itself was overwhelming for the sisters.
Lisa described it as, “A gigantic complex. There’s a security checkpoint like an airport and parking garages galore. It impresses upon you the amount of money going into medicine.”
Once inside security gates, the sisters were placed in a research room for examination.
Occasionally the twins were separated, which is when their experiences began to differ.
Michelle was placed under scrutiny during her examinations. This process involved studying her ovaries. Michelle felt uncomfortable because the doctors “sexualized” her.
“One particularly terrible incident involved a male doctor (whom I’d never met before) yanking the front of my underwear down so he could see how much pubic hair I had. To be honest, I didn’t see the need for this”, Michelle said.
After this incident, she told the doctors that she would not allow “swimsuit area touching”.
Michelle still wanted answers. As a teenage girl, she especially wanted to cure the sudden hair loss caused by her PCOS. NIH doctors prescribed her the birth control Yaz. Instead of regulating Michelle’s hormones, the pill made her feel worse. She experienced uncontrollable mood swings. After going off the pill, Michelle found out Yaz was discontinued and faced with a lawsuit for causing deaths.
The doctors concluded that her PCOS was a mild case. Still, Michelle felt that she did not receive enough information on her frustrating symptoms, such as hair loss and weight gain.
Michelle said that most researchers continued to treat her like a “piece of meat”.
“Doctors would come into my exam room, not even introduce themselves to me, and wouldn’t tell me what they were doing as they performed a physical exam,” she said.
The strangest question the researchers asked her was whether she had an “enlarged clitoris”.
After Michelle’s insistent “no”, they continued to inquire about this.
“It seemed a completely off-base question to me,” said Michelle.
Soon after this incident, she decided to remove herself from the study.
“PCOS sucks but not enough to be treated like a medical ape. I would have rather dealt with the symptoms outright than put myself through that again while still having to deal with the symptoms anyway,” said Michelle.
Despite Michelle’s poor treatment, Lisa remains in the ongoing study. She felt her role in the twin study was to serve as a baseline patient for Michelle’s PCOS research.
“I felt ancillary to her case study, where her case is primary to mine, and I’m only brought in when it’s relevant…as a twin. To validate or discount,” Lisa said.
Like Michelle, Lisa sought answers too. The NIH diagnosed her with Mosaic Turner’s syndrome.
Mosaic Turner’s is a “chromosomal condition that affects development in females,” says the U.S. National Library of Medicine website. Symptoms of the syndrome may include growth stunt and abnormal ovarian function.
When Michelle left, Lisa continued with the study to learn more about her own medical condition. Although some of her doctors were “abrasive”, she thought Michelle received “the brunt” of their scrutiny. However, Lisa did mention a doctor who was especially insincere.
She said about this doctor, “[She] had a bottle of Pepsi on her desk every time I saw her. She would qualify as obese herself. Yet, she took personal offense when my weight had not dropped since my last visit.”
Besides this incident, Lisa did not feel violated by other researchers.
Although Lisa hopes her study remains an “open case” for the NIH, she is unsure about this. After moving from Virginia to New York, she agreed to remain a volunteer patient. This involves her regular doctors sharing medical records with the NIH. Lisa is not in direct contact with the NIH or any of the original researchers.
Because this is an ongoing study, possibly decades long, Lisa has not contacted the NIH for details. She is somewhat uneasy about her information being virtually shared.
“I understand there are ethical guidelines to sharing patient information but when they are shared electronically it does make me wonder how many hands they’ve passed through before they get to the initial doctors we met,” she said.
Lisa admits she would love the opportunity to speak with the NIH about the progress of her study. The problem is, she wouldn’t know where to start.
“It’s such a big institution I don’t even know who the most sensible person to contact would be,” said Lisa.
Upon reflection, Lisa does not regret participating in the case study. She is frustrated that the NIH does not provide her with regular updates. But, she is grateful for the opportunity to contribute to medical research.
She said, “I wish I knew more about it than I did. Time will tell. You don’t volunteer to get something in return. But it would be nice to have some validation you know. That something worked and that it was worth it.”
Lisa empathizes with Michelle on her decision to drop out of the study.
“It can be invasive for some people. It does make me angry that her experience had to be so different than mine. I think sometimes research scientists become desensitized to everything they see and hear. And it’s easy to forget that they [patients] are actual people,” Lisa said.
The NIH didn’t respond to questions about Michelle’s treatment, citing patient privacy laws. A spokesperson from the headquarters said, “We appreciate hearing feedback because we want to ensure that all clinical trial participants are treated respectfully. We take comments like this very seriously”.
Michelle said she also supports Lisa’s decision to continue with the study.
Before closing each interview, Michelle and Lisa separately reflected on their experience as a twin.
“We’re really, really different. We kind of fought hard to get different senior pages in the [high school] yearbook. Lisa had completely different interests. She was in theater, I was in sports,” Michelle said.
Lisa also mentioned the yearbook incident. She said, “I don’t think people understand how much that negates your individuality. And I think someone’s individuality is the most important thing they can have”.