The University of Michigan Precision Health program is launching MY PART, a genetic testing program aiming to collect a more diverse and holistic biorepository for future research. While some U-M community members are excited by the promise of advancing genetic research, others have expressed concerns over data privacy.
The project aims to provide bioinformation to researchers looking to make medical breakthroughs in the future. To incentivize participation, subjects are paid $25 and given access to their personal ancestry tree for compensation when they give a blood or saliva sample, which will then be stored in the MY PART central biorepository. Participants were also asked to fill out a variety of questionnaires regarding their health information.
In an interview with The Michigan Daily, Janet Houghtby, manager of cohort development at Precision Health, said the main goal for the project was to bring in people outside the hospital setting who have been underrepresented within medicine to create greater inclusivity in research. Houghtby said participants were mainly recruited from preoperative areas, so all samples were coming from a similar population.
“We were getting kind of the same type of people coming through and participating,” Houghtby said. “We really realized that in order to make a difference in medicine and people’s health care and treatments, (we need to) to look at how we can best serve everybody.”
Jennifer Smith, professor of epidemiology and a member of the cohort development team, said in an interview with The Michigan Daily this project is a better way to get holistic health information from patients, which will aid staff in conducting more accurate and beneficial research.
“We think of genetics, and it (seems like) all geneticists, they only care about your genetic predisposition, but honestly, Precision Health is so much more than that,” Smith said. “Being able to integrate genomics into social factors or environmental factors, really understanding the person as a whole, is very important.”
In the genomics field, informed consent is an essential part of the research process. Houghtby said this is an important focus for MY PART as well because of the critical information that will be stored in the biorepository.
“If you’re going to sign up for something, you should know the purpose, you should know what the risks are, what the benefits are and how we’re going to protect your privacy,” Houghtby said.
MY PART will assign each participant’s genetic data a code rather than their name, so it can not be attributed to a unique individual. However, in the MY PART consent document, it is noted that they are not able to guarantee anonymity indefinitely.
“Today, researchers cannot identify you if they only have your DNA,” the consent document notes. “This could change in the future. Researchers will be asked not to do this, but we cannot promise that this will never happen.”
Smith said this uncertainty is common when it comes to genetic research because it is difficult to predict where future technology will lead the field.
“If I gave the government your DNA code, they wouldn’t be able to tell who you are because they can’t match it to anything,” Smith said. “But we don’t know in 20 years if, you know, everybody’s DNA is going to be on file somewhere in the government, so we can’t predict what matching might be able to happen at some point in the future.”
In order to achieve diversity among participants, MY PART has been cold emailing pre-existing Michigan Medicine patients who are members of underrepresented demographic groups. Some demographic characteristics the group screened for include age, race and ethnicity.
LSA senior Claire Waldron said she was initially enticed by the monetary compensation, as well as the prospect of getting access to her ancestry records without having to pay. Though she had reservations about the validity of the information, Waldron said she trusts Michigan Medicine as a strong research institution.
“They have good intentions with it,” Waldron said. “It’s the University of Michigan, and I trust them. I do think that with good intentions, there can always be less than ideal outcomes, and that’s something with a lot of uncertainty.”
Smith sees potential benefits in the form of preventative care and new treatment options.
“For example, our database has a lot of people who have cancer,” Smith said. “By studying their genetics, which don’t change over time until they get cancer, a genetic disease, we can actually identify people who might be at higher risk for certain cancers. We’re trying to do the preventative pieces and the treatment pieces. Genetic studies can help with both of those things.”
LSA senior Casey Martin said she would not feel comfortable participating in the study because of the vast amount of information researchers would have and the lack of control she would have over this sensitive data.
“Even your doctor doesn’t have your genetic information unless you’ve gotten genetic testing done, and even if you have, it’s normally for a very specific thing,” Martin said. “The University of Michigan would just have that, and what are they doing to protect it?”
Participants are allowed to withdraw from the study at any time, but the informed consent document notes that they will not be able to get back samples or any information that has already been shared. The consent document also says approved researchers will have access to personal health information indefinitely.
The informed consent document states that researchers who have access to the database can use genetic information to study any disease or condition. LSA junior Olivia Schafer is interested in a career in genetic counseling and said it is this contingency that makes her uncomfortable.
“The idea behind a repository is to keep it for the future, so it makes sense that they don’t know what’s happening with it yet,” Schafer said. “But depending on the research that can be done, I would want the option to be able to opt out.”
Schafer also said she thinks offering ancestry information in exchange for participating might target marginalized communities who are less able to track their own heritage.
“Slavery and having ancestors who are refugees are reasons that people don’t have access to their ancestry information,” Schafer said. “I think making that possible incentivizes those people to give their data when they otherwise wouldn’t have.”
While MY PART made clear participants should not expect to receive any information that will directly benefit them, Michigan Medicine cardiologist Brahmajee Nallamothu, one of the co-directors for Precision Health, said the benefits are more indirect.
“I think that this is the key to unlocking discoveries that we can really translate to care for patients,” Nallamothu said. “I’m very proud of how the individuals try to inform participants so that we are all on the same page. How they set up systems to share data, but protect it. And then at the very end, I think I’m really confident in the idea that this is how we can lead and move towards progress.”
Though researchers are aware of the risks in data security, Nallamothu emphasized the importance of protecting the data within the biorepository.
“When it comes to using data within the electronic health records at the University of Michigan, we’re all cautious because our own families are in here,” Nallamothu said. “My family’s data is in there. My mom’s data is in there. My wife’s, my kids’, my own. I think that just makes us think very carefully, as … stewards of this, to try to use this for the betterment of everyone, but at the same time be very cautious and protective as much as we can for individuals.”
Daily News Reporter Isabella Kassa can be reached at firstname.lastname@example.org.