Our genes have a lot to tell us. But they can’t tell us who we are.
Way back in the 1980s, my fellow genetics grad students and I would comment on how our chosen field of study was changing how we perceived our biological families, foretelling what frightening fate was in store for each of us simply by being genetically related. We were mostly just being geekily humorous (we thought). Little did we know then just how prominent genetic testing would soon become as a kind of early 21st-century biology-based fortune-telling via the rise of recreational genomics companies like Ancestry and 23andme.
A recent example of this phenomenon can be found in an anxious letter to the New York Times’ “Ethicist.” The anonymous writer describes the delight of meeting his/her/their Norwegian relatives, and their unconstrained acceptance of the writer into the family. Plans were made for multiple visits back and forth, and the family tree was redrawn. But subsequent genetic scans showed that there was little, if any “Norwegian DNA,” and the identity of recent ancestors who likely went off the sexual fidelity ranch was brought to light. However, the letter writer’s concern was not the ancestral hanky-panky itself, but the fear that the Norwegians who now embraced would let go if they learned of the genetic disconnect. So, tell them or not?
The ethical considerations here are really about honesty and transparency and inclusiveness, not biology. Telling the truth about oneself is paramount in any relationship of any value. I am reminded vividly of one of my early lessons on finally acknowledging my membership in the LGBTQ+ community: We all build a “Family of Choice” that is every bit as meaningful and supportive as a family of biology. Sometimes even more. As strange as it might sound, if the Norwegians reject their new “family member” because he is lacking the genes for, e.g., enjoying lutefisk (if there is such a gene), then that was not really a meaningful family relationship to begin with.
On the other hand, establishing genetic relatedness can have a positive outcome, even if that knowledge is at first unwelcome. You may remember the initial embrace of ancestry tests by racial purists who thought genetics would support their ignorance. They were soon proved wrong, quite publicly at times. For example, the white supremacist Craig Cobb learned on a daytime talk show that his genetic ancestry was 14% Sub-saharan African, much to the delight of everyone on the set but Mr. Cobb. And the mental gyrations taken to explain away such results are even more ludicrous than the initial claims of purity. However, the revelation of ancestry shared across racial lines is still delicious, and maybe even salutary in forcing at least a few of the purists to reconsider their beliefs.
There are many other examples of revelations one could draw on from the growing number of genebased tests of ancestry, health, zoology, fitness and diet, etc. But what many of these have in common, at least in their general public understanding, is a form of genetic determinism that is actually contrary to true genomic science. Despite the initial hype of the Human
Genome Project, the genome is not really the Book of Life or Google Maps (or, as one contrarian geneticist wrote at the time, “not even Apple Maps”). It is more of a parts list, or a blueprint, at best. And as every construction person knows, there is a huge difference between design and product, and massive variability happens in translating a blueprint’s potential into a building’s reality. The outcome of any one genome’s instructions is completely dependent on the changing environments in which they are read and translated. The complexity of the genome is more than compounded by the larger complexity of environmental experience.
As reported by the Wall Street Journal and others earlier this month, 23andme’s stock has basically crashed from its once-lofty heights and the company is almost out of cash. One reason has to do with the extremely difficult challenge of translating complex genetics into health information and new treatments that actually work. But it is more likely that this gap between promise and reality has people finally realizing that the kind of information 23andme provides can be entertaining (or disconcerting), but really not much more helpful than a horoscope reading advising you to be a better and healthier person.
Fintan Steele is an ex-benedictine monk and priest with a PH.D. in biology/genetics. He spent most of his life in science communications, including scientific publishing and, most recently, for biopharma and academic centers. He and his husband live in Hygiene. Email: fsteele1@me.com.