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Individual Protections for Collective Health Security: Privacy, Ownership of Genomic Information and the Future of Public Health Preparedness

The views expressed are those of the author and do not necessarily reflect the views of ASPA as an organization.

By Nathan Myers and Isabella Katz
September 18, 2023

Genomic sequencing has opened up major new pathways in pharmaceuticals and medical care. This was particularly evident during the recent COVID-19 pandemic when genomic sequencing served to increase the speed of vaccine development. However, using these gene-related technologies to their fullest potential requires having genomic data that is a fair representation of the population. Acquiring this type of sample will mean resolving two long-standing policy dilemmas surrounding privacy of genetic information and genetic information as intellectual property.

In addition to the important role that mapping the genetic sequence of COVID-19 played, research using a broad base of genetic material can advance public health preparedness in other ways. During the pandemic, studies were conducted to determine whether some people were more genetically predisposed to COVID-19 infections than others. In his 2018 book Flu Hunter, Robert Webster posited that genetic research would be able to identify the genetic markers of those with greater resistance to avian influenza and other diseases. This could then help to protect and treat those with greater vulnerability. Such knowledge would have important implications for determining the risks of frontline workers and developing protective/treatment measures.  

While use of direct-to-consumer genetic testing services like 23 and Me have become popular, there remains a significant segment of the population that remain concerned about providing a biological sample for the purposes of genetic research. For some, these concerns are magnified when the U.S. government is involved, due to prior breaches of trust, as well as mis/disinformation spread during the COVID-19 pandemic. Despite existing federal and state protections through policies such as the Common Rule, HIPAA and GINA, Americans remain concerned that genetic information could be used to discriminate against them in matters such as life insurance, for example. Even if comfortable sharing information about themselves, many parents are concerned about unknowingly releasing prejudicial information regarding their children’s health. Research has shown that individual data can never be completely anonymized, leading organizations like the NIH to develop rules about individual data only being available if requested. Like the Internet, genomic research may require a larger discussion of the meaning of privacy in the modern age.   

Many Americans have concerns about potential misuse of their genetic information due to a long history in the United States of not respecting individual autonomy in the health sciences. The Tuskegee Syphilis Experiment and the use of Henrietta Lacks’ cancer cells in research without her consent are just two examples. Another major source of distrust is the proliferation of dis/misinformation prior to, during and subsequent to the COVID-19 pandemic. With widely circulating conspiracy theories surrounding vaccines and alleged gain-of-function studies, there are many in the United States that are likely to believe their genetic information would be misused in some way.

The ability to control how one’s genetic information is used and the question of who actually owns genetic samples is another controversy in need of better resolution. Some would argue that individuals should be able to exercise ownership over their own genetic make-up, but there are many complicating factors. For one, people inadvertently leave samples of their genetic information (hairs, skin cells) wherever they go. Is all such material protected? Although each person’s genomic or full complement of DNA is unique, the specific variants within the individual’s genome may be widely shared with biological relatives or even across the entire human population. Also, when people have children, that child is a combination of the genes from the two parents. So do inherited genes then become shared property of the parent and the child? If an individual who shares substantial genetic traits with a sibling donates data for genetic testing, passing ownership of the sample to the testing organization, what does that act mean for the ownership rights of the sibling? According to the U.S. Code, genes themselves are not patent eligible, however, companies could make modifications to genes which would be patent eligible. This then raises the hypothetical of what if a company identified a gene producing less disease susceptibility and modified to register it as intellectual property? What affect would this have on pandemic response efforts?  

Scientists and bioethicists have long been wrestling with such complex questions when it comes to the use of genomics. Discussions are often framed as the rights of the individual vs. scientific advancement. However, the COVID-19 pandemic made clear that in the future the availability of a broad, diverse database of genetic information will be needed to help guide public health mitigation efforts and design more effective countermeasures. Genomic surveillance can be a vital tool for determining a virus’ origin and tracking its mutation over time. Large-scale population studies can allow for better mitigation approaches and improved pharmaceutical interventions. However, all of this will require access to biobanks with representative data from the U.S. population.

History has shown that those most in need of protection are often least likely to trust their biological information to the government. The United States should consider enacting policies adopted in other countries to provide citizens with a greater sense of trust and ownership. Increasing our collective public health security means addressing individual skepticism and mistrust.

Author: Nathan Myers, Ph.D. is a Professor in the Department of Political Science and Director of the Master of Public Administration at Indiana State University. His areas of research include public policy, public health emergency preparedness, and the governance of biotechnology. He is the author of Pandemics and Polarization: Implications of Partisan Budgeting for Responding to Public Health Emergencies. Myers serves as an academic advisor to the Continuity of Supply Initiative. Email: [email protected]; Twitter: nagremye1980

Author: Isabella Katz is a law student at The University of Dayton School of Law. She graduated from Indiana State University with degrees in Legal Studies and Chemistry. She is interested in pursuing Intellectual Property Law as well as other possible legal areas post graduating from UD Law. Email: [email protected] ; LinkedIn: Isabella Katz

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