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.
Follow the conversation and share the articles in this symposium using #DTCgenome!
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics 2019 annual conference was organized in collaboration with Nita A. Farahany of Duke Law School, and Henry T. Greely of Stanford Law School.
Are Wellness-Based Insurance Products Really a Win For Everyone?
By Anya Prince
Consumer Genetics: To Test or Not to Test?
By Marnie Gelbart and Nadine Vincenten
Gamete Donor Anonymity is a Myth: Q&A With Seema Mohapatra
By Alex Pearlman
How Might we Approach Discussions on the Implications of Using Genetic Data from a Human Rights or Social Justice Perspective?
By Alicia Ely Yamin and Jonathan Chernoguz
Getting to Know You: The Power of Direct-to-Consumer Giants Have to Understanding Our Genetics
By Clio Sophia Koller
Do You Own Your Genetic Test Results? What About Your Temperature?
By Jorge L. Contreras
Regulation of Human Genome Editing in the Dawn of the CRISPR Era
By Scott J. Schweikart
Who are the Healthcare Providers Approving Consumer-Driven Genetic Test Orders?
By Emily Qian, Magalie Leduc, and Birgit Funke
Ethnic Identity and Genomics Research: Toward Creating Culturally Sensitive Policies and Practices
By Erin Turbitt and Megan C Roberts
3 Things You Should Know About the Petrie-Flom Center’s 2019 Annual Conference
By I. Glenn Cohen and Carmel Shachar