Consuming Genetics: Ethical and Legal Considerations of New Technologies

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And check out many of our speakers’ slide presentations and our “Consuming Genetics” blog symposium!

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2019 annual conference: “Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies.” This year’s conference was organized in collaboration with Nita A. Farahany, Duke Law School, and Henry T. Greely, Stanford Law School.

Description

Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.

Already the global genetic testing and consumer/wellness genomics market was valued at $2.24 billion in 2015 and is expected to double by 2025 to nearly $5 billion. The rise of direct-to-consumer genetic testing and DIY kits raise questions about the appropriate setting for these activities, including a concern that delivering health-related results directly to consumers might cause individuals to draw the wrong medical conclusions. At the same time, advances in CRISPR and other related technologies raise anxieties about the implications of editing our own DNA, especially as access to these technologies explode in the coming years.

In an age where serial killers are caught because their relatives chose to submit DNA to a consumer genealogy database, is genetic privacy for individuals possible? Does the aggregation of data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate already significant health care disparities? How can we prepare for widespread access to genetic editing tools?

As these questions become more pressing, now is the time to re-consider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.

This event was free and open to the public.

Agenda

8:30 – 9:00am, Registration

9:00 – 9:10am, Welcome Remarks

9:10 – 10:10am, Consumer Genetic Technologies: Rights, Liabilities, and Other Obligations

10:10 – 10:20am, Break

10:20 – 11:40am, Privacy in the Age of Consumer Genetics

11:40am – 12:40pm, Tinkering with Ourselves: The Law and Ethics of DIY Genomics

12:40 – 1:20pm, Lunch

1:20 – 2:20pm, Regulating Consumer Genetic Technologies

2:20 – 2:30pm, Break

2:30 – 3:50pm, Consumer Genetics and Identity

3:50 – 4:00pm, Break

4:00 – 5:00pm, The Impact of Genetic Information

5:00 – 5:15pm, Closing Remarks

Learn More

Slide Presentations

​Blog Symposium

Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School with support from the Center for Bioethics at Harvard Medical School and the Oswald DeN. Cammann Fund at Harvard University.