Saturday, 1 June 2019

Consuming genetics: ethical and legal considerations of new technologies - videos online

The Petrie-Flom Center at Harvard Law School recently held their annual conference which was devoted to the subject  of “Consuming genetics: ethical and legal considerations of new technologies”. They very kindly recorded all the talks and have made them available online. You can access them from this link:

I've only had time to watch a few of the talks so far but so far they are all of very good quality. I highly recommend that you take time to watch the very moving talk from Kif Augustine-Adams on "Generational failures of law and ethics: rape, Mormon orthodoxy, and the revelatory power of Ancestry DNA". It is a first-hand account of the disruptive power of genetic ancestry testing and the effects on families when long-held secrets are uncovered and promises of anonymity are breached.

It's also worth watching Liza Vertinsky's talk on "Genetic paparazzi vs. genetic privacy". In the UK DNA theft is illegal thanks to the Human Tissue Act passed in 2004. If you test someone's DNA without their consent you could potentially be put in prison. In the US no such laws yet exist and it is possible to test so-called "abandoned DNA" from discarded items without the individual's consent. I suspect it's only a matter of time before a celebrity's privacy is breached by testing their DNA without consent which is likely to cause a big backlash and encourage the introduction of new legislation.

I also recommend watching Natalie Ram's session on "Genetic genealogy and the problem of familial forensic identification" which is very topical in light of the current debates about law enforcement usage of genetic genealogy databases. Natalie highlights the inter-relatedness of DNA which means that informed consent becomes a non-issue. Even if you don't want to upload your DNA to GEDmatch, if your sister exercises her right to share her DNA you could still be caught up in a criminal investigation and have your family tree and your social media accounts trawled by the police.

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