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.
We are excited, therefore, to have many major thought leaders in this space discuss these issues at the Petrie-Flom Annual Conference, “Consuming Genetics: Ethical and Legal Considerations of New Technologies,” which will take place at Harvard Law School in May.
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?
Executive Director Carmel Shachar and Faculty Director I. Glenn Cohen explain why, as these questions become more pressing, now is the time to reconsider what ethical and regulatory safeguards should be implemented and discuss the many questions raised by advancements in consumer genetics.
Why was this topic chosen for the Petrie-Flom Center’s 2019 annual conference?
Between the stories of serial killers being caught thanks to familial DNA databases, the increased promotion of DTC testing like “23 and me,” and the explosion of CRISPR in the news, we felt that the time was right to revisit ethical and legal questions around consumer genetic technologies. We’re in the midst of a revolution to bring these technologies from the lab into everyday life. That shift requires attention to important legal and ethical questions about the use of these technologies.
What are the most pressing legal issues in the field of direct-to-consumer (DTC) genomics, and why?
Privacy is a very big concern these days, just look at the stories around Facebook or the implementation of the General Data Protection Regulation (GDPR) in Europe. DTC genomics raises the stakes in the privacy debate, because we view genetic information as “extra-personal,” and because there is the potential for the actions of family members to impact your own privacy. Many people are unaware of what happens to their data after it is collected and that they may be unwittingly helping corporations build databases for purposes they may not agree with. In some areas, like Alzheimer’s or Non-Invasive Prenatal Testing, the information is very sensitive and issues are raised when patients try to understand the results on their own.
The increase in DTC tests also changes the encounter between physician and patient in ways that neither might be ready for.
When we talk about needing regulatory safeguards on products and data sharing, how do conferences like this one accomplish that goal?
Everyone is struggling to answer these complex ethical and legal questions. Conferences like ours carve out a space for people to share ideas and brainstorm how we can accomplish a future that is safe and ethical for everyone.
Our conferences attract a really diverse set of attendees and presenters: patients, physicians, scientists, members of the media, government officials, industry representatives, and more, and there are “emerging properties” from their interaction. As with our past conferences, we are also hoping to publish a book from these contributions and thus share the learning with the broader world.
