I Donated My DNA to Help Stop the Coronavirus
Will genetic volunteers be punished with discrimination, denial of medical insurance, and loss of employment opportunities?
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Last night, I entered intimate personal health information into a database that can be accessed by anyone. This is not a decision that I made lightly. I shared my information with the Personal Genome Project (PGP) at Harvard Medical School. Founded in 2005 by Dr. George Church, the PGP represents an ideal, a vision of effecting ultimate progress in DNA science through the generosity of participants willing to expose personal data for a greater good. Before Covid-19, the PGP used this data for open-source research projects to further our understanding of human genetics, biology, and health. The PGP will now singularly focus on Covid-19, studying both those who have the disease and those who don’t.
Their strategy is uniquely advantaged, as the PGP has already collected its participants’ DNA. Ideally, all subjects who have agreed to participate in this open-source project have already entered all varieties of medical information, from static measures of height, weight, and blood type to information collected over years through contacts with physicians and medical systems.
The grand scheme is to connect genotypes (obtained through whole-genome sequencing) to phenotypes, expressions of traits, health, and disease history. In the end, genome sequencing is only as useful as our ability to associate it with clinical meaning over the lifetime of an individual.
The PGP has now made a commitment to aggressively address Covid-19 by sending out frequent, detailed questionnaires about volunteers’ current experience with all aspects of the disease, from the presence of mild symptoms to eliminate the frank expression of the disease, its treatment, and ultimately its outcome. The survey also includes questions about medications taken for non-Covid-19 medical disorders.
The PGP is also accepting new volunteers who are willing to download results of whole-genome sequencing obtained through any source. They do not perform sequencing themselves but rather collect data, both genetic (from whole-genome sequencing) and medical (from personal narrative histories)…
