Joining as a PGP Volunteer
I’m Nancy. I recently joined the Harvard Personal Genome Project as a volunteer. I think I’ve joined at a great time, when the Harvard PGP has the world’s largest public dataset that has whole genome sequences linked with genotypes.
I’m excited to join in what I view as an effort that addresses the inherent ethical issues in genomics research: genomes are as individual as a fingerprint, and to stretch the analogy a bit, a smudged fingerprint (de-identified) or summaries of large amounts of fingerprints (aggregation) is only so useful, especially as with the rise of precision medicine we start targeting smaller and smaller subsets of the population with precision medicine.
I think there are many challenges in the HPGP right now, among them challenges in funding and staffing, which contribute to a lot of frustration on behalf of participants, many who have donated blood and saliva samples and waited months and even years without a returned sample from us.
As I’ve worked with the HPGP staff over the last few months, I’ve come to see that every last one of the staff members is working extremely hard to get samples sequenced and genomes returned. However, none of us work on HPGP full-time and we also rely on donated effort from other organization, such as sequencing centers (which we’re very grateful for!). Although our pace may seem slow, I’m still really impressed by how much work has been done already.
I also like to brainstorm about the future. A future where, among other things, you might be able to check on the status of your genome ala Domino’s Pizza instead of having to email us and have to wait for us to laboriously reply to the many emails we get each week.
On that note, happy fall everyone!