Previously I mentioned I was invited to enroll in Harvard's Personal Genome Project. They take "informed consent very seriously." I am impressed with their frankness. They do not sugar coat anything. They are very clear that there are no known benefits in participation. Being a participant in this study could potentially result in very bad consequences: No privacy, no anonymity, insurance and employment nightmares AND the potential to be framed scifi-style in a criminal act... To all of this I say "YES PLEASE!"
The eligibility entrance exam can take anywhere from 50 to125 minutes to complete, not considering time spent taking the the exam over and over if one needs to: only a perfect score indicates "informed" and "knowledgeable" about rights, risks and benefits as a participant.
Participants are also expected to answer questions on genetic material, gene transmission, gene expression, gene regulation and the potential relevance of genetics knowledge to society. I appreciate this inclusion. Not all scientific studies provide information about the science, let alone care that study participants know about the science they are participating in. A study guide is provided.
some Detail:
As noted, I relinquish hope for privacy:
PGP results will be published on publicly accessible websites. Although the PGP plans to implement standard security measures for the websites, the PGP does not guarantee that your personal data will remain confidential or that you can maintain your anonymity. When you consider that your PGP results will document your genome, hair and eye color, height, facial features, and unique medical conditions, it becomes clear that the PGP must warn participants that promises of anonymity are neither realistic nor ethical.
A flak jacket isn't body armor:
Even when strong security measures are in force, breaches happen. Hackers could gain access to your personal data; computers could get stolen; researchers or participants could unintentionally expose data that reveal more personal information than they intended. In addition, computer forensics experts can sometimes retrieve data that have been deleted from computer hard drives. So, even if you request that all your data be removed from the project databases, it is impossible to confirm that the data were fully removed.
But put on a happy face anyway:
Because of these issues, the PGP [Personal Genome Project] cannot promise permanent confidentiality or anonymity. To participate, you should be comfortable with this fact.
They also take the silver lining off of the Genetics Information Nondiscrimination Act: it doesn't mean much for my future. Just as The Law doesn't do much for me socially:
Another risk associated with personal genomics is that an insurance company could refuse to cover you if your DNA shows that you have a genetic propensity for a disease, or an employer could refuse to hire you because providing health benefits could be too expensive. Genetic discrimination is against the law in the United States since President George W. Bush signed into law the Genetics Information Nondiscrimination Act (GINA) in May 2008. The law doesn't cover life, disability, or long-term care insurance, however, and has other shortcomings according to some bioethics experts. Plus, it's unrealistic to think that genetic discrimination won't occur, simply because it's against the law.
And then some reminders: (1) the researchers are human (2) machines are not always accurate (3) I am human:
... you should keep in mind that mistakes happen. The sequencing results, or the data that are posted on websites, could contain errors. The psychological impact of errors could be significant. If the project or some third party (possibly erroneously) claims that you have a predisposition to a debilitating disease, you shouldn't overreact. You should consult a physician or a licensed genetic counselor.
I think my favorite part so far is that they will try to make a new, immortal me: Scientists will perform DNA sequencing on the tissue samples and use them to study biological characteristics, DNA, RNA (gene expression), physical traits, and the presence and characteristics of micro-organisms in the specimen sample. Scientists may also attempt to create a living tissue sample known as a cell line. Cell lines provide a renewable supply of your cells and DNA.
Brevity on the genetics portion: to emphasize unintended consequences of gene sequencing, I was to answer how researchers could tell if one of two parents was not a biological parent during routine screening. Oh, also, I messed up on simple math. Or the punnet square. Same diff. Or, I chose the default answer inadvertently. For this I will never know the truth. Still, note for next time: move the arrow away from the "ok" button immediately.
> Passed the exam. Submitted. Now awaiting results. Three possible scenarios: 1. accepted, 2. wait-listed, 3. rejected. Personal Genome Project: http://www.personalgenomes.org/participate.html GINA: http://www.genome.gov/24519851