Regarding the potential use of genetic information in dating apps as mentioned in the interview on 60 Minutes:
In addition to hearing from individuals seeking information about the diseases afflicting loved ones or themselves, I have heard concerns and fears about the use of genetic technologies. Thus, I would like to reassure everyone that the serious ethical issues posed by genetic technologies remain an important component of my work, as we must balance the needs of those who are suffering directly or indirectly of devastating diseases with the need to ensure that genetic technologies are not misused.
(This page is in response to (and aided by) a flood of questions following the 60 Minutes interview 8-Dec-2019. The comment on 60 minutes was not an "announcement", but just a brief reply to a question about ways to get access to genetics more more equitably/affordably than gene therapy or IVF-PGT.)
Q1: Are you advocating that everyone use genetic information to help them find partners?
Absolutely not. I believe that how we find our partners is a personal choice. While some use dating apps, others choose not to. While some ask friends or families to help them find partners, others prefer to search more privately. And, while some seek genetic counseling before having children, others do not. Similarly, while some will take action upon learning that the child they are carrying is likely to be born with a serious genetic disease, others see no reason to take action. These are all personal choices, and my goal is to provide information and options for those who seek input.
Q2. Is it possible to have genome privacy?
Recent progress in encryption queries and blockchain ledgers make it more possible than before to keep one’s genome sequence private. We support a new model in which an individual's genomic data are not shared with companies or any other individual. Indeed, such data can be unreadable even by the user. In this case, any user who wants a readable version, would need to reanalyze their own genome.
Q3. If we look closely enough, won't everyone be 'incompatible'?
No. Clinically recognized (ACOG, ACMG) severe disorders (300+ genes like ASPA, GALC, HEXA, SMN1) affect about 0.6% of live births. So everyone is genetically compatible (in this sense) with over 97% of people. [Some say that 8% of people are affected with rare diseases and societal consequences, but I am focusing, for now, on gene variants likely to give rise to severe disease.]
Finally, a note about the terms “compatible” and “incompatible” as well as other terms, such as “wrong” and “right”, which have been used as descriptors for potential partners in life, marriage, and/or raising children: When used in the context of genetic testing, “compatible” and “incompatible” would refer to the potential of possible partners to meet the goals of individuals participating in a genetically-informed matching service. They would not at all refer to whether individuals have the potential to fall in love and then go on to experience life-long partnerships; so much more than genetic compatibility goes into rewarding partnerships. Indeed, we suspect that, for many, falling in love will minimize if not preclude altogether any consideration of genetic compatibility or incompatibility. The terms “right” and “wrong” have also been used in the context of genetic testing but, as these terms carry the nuance of judgment, they may be more prone to being misinterpreted.
Q4. What about dominant mutations, are these considered compatible?
Individuals carrying dominant mutations are certainly compatible with others, including those who indicate in their profile that they are not concerned about the disease in question. For example, dominant mutations that are compatible with adulthood would not neccessarily be considered a serious disease. Those who carry dominant mutations associated with disease may also, or alternatively, select to use genetic counseling services or genetic screening. A similar rationale can be taken in the case of X-linked mutations that cause serious disease in XY males but are benign in XX female carrier mothers and daughters.
Q5. Is this Eugenics?
No. We are advocating personal choice and, for those individuals wishing to incorporate genetic information into the choices they are making for their own families, we hope to provide information and facilitate options. Our motivation is much driven by the recognition that personal circumstances, needs, capabilities, and fears vary vastly among us and that, for some, a deeper knowledge of their genetic make-up will be helpful. Put more emphatically, we are adamantly opposed to eugenics, of superseding personal choice with governmental or community judgment, bullying, and coercion. In terms of equitable access to genetics, matchmaking may be an important option relative to less affordable methods like gene therapy and IVF-PGD.
Q6. Would we see only positive matches?
Yes, and the definition of a positive match will reflect by each individual's choices.
Q7. Will we learn about diseases that aren't actionable?
We will not report to any individual on specific diseases. For individuals seeking specific information about their genetic make-up, we recommend engaging with a CLIA / CAP-approved service that provides whole-genome information along with physician consultation.
Q8. What about love?
Yes. Definitely. Love, above all. And, along with that, I believe that one cannot dictate or overrule love, perhaps the most personal and precious choice of all.
Q9. What genetic variants and who decides?
The number of genetic variants that can lead to serious disease will grow as research continues to discover the genetic basis of disease. (See answer to Q3 for examples.) As for who decides, I imagine that participants will be provided with a list of variants that have been clinically determined to produce serious disease and from which they will be able to draw their own profile of choices.
Q10. What about stigmatization or discrimination?
Above all, we must avoid stigmatization and discrimination.Rather, I would strongly encourage respect for individuals and their personal choices, regardless of their genetic, socio-economic, ethnic, cultural, educational, and religious backgrounds. Note the Genetic Information Nondiscrimination Act, which was a historic step toward preventing the misuse of genetic information in the United States.
Q11. How is this different from existing genetic counseling?
What I am proposing would be complementary to genetic counseling services, such as are available through the American Board of Genetic Counseling (over 5,000 as of 2019). Such counseling services provide a wide range of information, including to individuals who are seeking, but have not yet found, a partner, to prospective as well as expecting parents, as well as to individuals who are seeking genetic information separate from any concern about finding a partner or having children. What I mentioned on 60 Minutes was focused primarily on individuals seeking information as they look for a partner.
Q12. Can one know one’s predisposition for any disease by obtaining one’s family history?
No. Many cases of serious disease arise without having known impacts on members of the family, present or past.
Q13. When will an app be available?
Launching of the app will depend on the course of conversations, such as the ones following the 60 Minutes interview. The application of genetic technologies to our lives is a complicated, highly nuanced process that must be vetted through two-way conversations about a wide diversity of issues in a wide diversity of communities.
Q14. Are you doing anything for carriers who are already married?
Yes. My laboratory is conducting considerable research on many categories of therapeutics and diagnostics. See our lab publications
Please feel free to send us your comments, opinions, and questions as well as suggestions for clarifications to this web page.
[Note that these are personal thoughts from George Church and do not represent any university, company, or other individual.]
Initiated 11-Dec-2019. Updated 14-Dec-2019