“In light of what we’ve learned about the role of Facebook and Cambridge Analytica in the 2016 Election, people are now asking new derivative questions about other entities that are holding data or information about themselves and people are increasingly concerned. I don’t think this is a mere coincidence. People are now seeing connections between what does it mean to have unfounded trust in a social media company and whether we are having the same kind of unfounded trust in the government or other types of private entities when it comes to biological information.” – Osagie Obasogie, Professor, UC Berkeley School of Public Health
How curious are you about your genetic makeup? There are hundreds of companies that provide direct-to-consumer tests that promise your genealogy, deep ancestry and biogeographical ancestry. Other tests offer genetic information about your health and traits, with some promising your whole genome sequencing. But when you get the results, do you really know what you have? And do you know, without a doubt, who ultimately has access to your genetic information?
This week, our team meets up in the studios of KQED in San Francisco to see if we can sort out the answers to the question – genetic testing – promise or peril?
Join Life of the Law‘s team Osagie Obasogie, Tony Gannon, Nancy Mullane and guest, Lea Witkowsky who joined the Innovative Genomics Institute as a science policy analyst to look at the regulatory landscape as it relates to new genetic engineering technologies and the role of public perception in biotechnology development and adoption.
If you haven’t yet listened to GATTACA REVISITED: Up the Borrowed Ladder, now’s your chance!
This episode of Life of the Law was edited and produced by Nancy Mullane, Tony Gannon and Andrea Hendrickson. Our in-studio engineer was Katie McMurran. Our Social Media Editor is Rachael Cain.
Thanks to our In-Studio team Lea Witkowsky, Policy Analyst with the Innovative Genomics Institute; Osagie Obasogie, Professor at UC Berkeley’s School of Public Health; and Life of the Law’s Associate Producer, Andrea Hendrickson.
We’re a non-profit project of the Tides Center and we’re part of the Panoply Network of Podcasts from Slate. You can also find Life of the Law on PRX, Public Radio Exchange.
Special thanks to The Haas Institute for a Fair and Inclusive Society, and Marcy Darnovsky and Osagie Obasogie at The Center for Genetics and Society.
© Copyright 2018 Life of the Law. All rights reserved.
Supplemental Reading and Listening:
Personal Genetics Education Project raises awareness and sparks conversation about the potential benefits as well as the ethical, legal and social implications of personal genetics. “We strive to be inclusive of all voices in these discussions, regardless of socioeconomic or educational background, cultural or religious affiliation, and ethnic or personal identity.”
Beyond Bioethics, Toward a New Biopolitics Osagie Obasogie (Editor), Marcy Darnovsky (Editor), Troy Duster (Foreward), Patricia Williams (Afterword by)
The Wired Guide to CRISPR by Megan Molteni – April 17, 2018 https://www.wired.com/story/wired-guide-to-crispr/
What Happens When Geneticists Talk Sloppily About Race by Ian Holmes – April 25, 2018 https://www.theatlantic.com/science/archive/2018/04/reich-genetics-racism/558818/
How Genetics is Changing Our Understanding of Race by David Reich – March 23, 2018 https://www.nytimes.com/2018/03/23/opinion/sunday/genetics-race.html
A response to David Reich’s piece: How Not To Talk About Race And Genetics
Don’t edit the human germ line – by Edward Lanphier, Fyodor Urnov, Sarah Ehlen Haecker, Michael Werner & Joanna Smolenski | Nature | 12 March 2015 https://www.nature.com/news/don-t-edit-the-human-germ-line-1.17111
Can We Cure Genetic Diseases Without Slipping Into Eugenics? by Nathaniel Comfort | The Nation | July 16, 2015 https://www.thenation.com/article/can-we-cure-genetic-diseases-without-slipping-into-eugenics/
This Court Battle Will Decide Who Will Make a Fortune From Gene Editing Tech by Susan Decker and Michelle Cortez – April 29, 2018 https://www.bloomberg.com/news/articles/2018-04-29/berkeley-fights-harvard-mit-over-profits-from-gene-editing-tech
Doctors in China Lead Race To Treat Cancer By Editing Genes by Rob Stein – February 21, 2018 https://www.npr.org/sections/health-shots/2018/02/21/585336506/doctors-in-china-lead-race-to-treat-cancer-by-editing-genes
The Legal and Regulatory Context for Human Gene Editing by R. Alta Charo – Issues in Science Technologies Volume XXXII Issue 3, Spring 2016
California’s Sterilization Survivors: An Estimate and Call for Redress American Journal of Public Health (AJPH) – January 2017 by Alexandra Minna Stern PhD, Nicole L. Novak PhD, Natalie Lira PhD, Kate O’Connor MPH, Siobán Harlow PhD, and Sharon Kardia PhD https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2016.303489
H.R.1313 – Preserving Employee Wellness Programs Act
115th Congress (2017-2018)
Living Survivors of California’s Eugenic Sterilization ProgramProduced by the California Eugenic Sterilization Research Group, January 2017 https://docs.google.com/document/d/19eRaBJFyIPfAvuOj1X3OXduP45JWk55Y_Z2gnPTc_wU/edit#heading=h.l968v336ebof
Regulation of Assisted Reproductive Technologies: Gains and Losses, Indira Chakravarthi – First Published January 18, 2016 http://journals.sagepub.com/doi/full/10.1177/0971521515612866#_i12
Unesco Panel of experts call for ban on “editing” of human DNA to avoid unethical tampering with hereditary traits https://en.unesco.org/news/unesco-panel-experts-calls-ban-editing-human-dna-avoid-unethical-tampering-hereditary-traits