The advent of online genetic testing has spurred thoughtful and passionate debate about the best way to deliver genetic counseling services. It is a polarizing issue with good arguments on both sides. The discussion recalls events that played out nearly twenty years ago – events that were critical to the development of the genetic counseling profession. Counselors young and old have much to learn by re-visiting this history.
In 1992, genetic counselors and medical geneticists were intertwined like the strands of a double helix. Most genetic counselors worked closely with medical geneticists. Even prenatal counselors often worked with obstetricians who were also board-certified medical geneticists. For the previous decade, professional certification of genetic counselors and medical geneticists had been overseen by the American Board of Medical Genetics (ABMG).
In 1991, ABMG petitioned the American Board of Medical Specialties (ABMS) for the creation of an American College of Medical Genetics (ACMG). Medical geneticists had much to gain in prestige and reimbursement by joining ABMS. ABMS agreed, with one huge provision – only doctorate level professionals could be accredited, effectively excluding genetic counselors from the deal. It felt like we were being sold out for a fistful of dollars. How could we exist without the support of medical geneticists? Remember, this was well before the availability of other employment opportunities for genetic counselors that we now take for granted, such as in oncology, neurology, cardiology, or DNA testing laboratories. It appeared to be the end of the genetic counseling world as we knew it.
ABMG by-laws required a membership vote, and 2/3 approval from the membership was necessary for the motion to pass. Because genetic counselors made up about 40% of ABMG membership,
a united block of genetic counselors could stop the restructuring. Strong feelings on both sides made for tense moments. Genetic counselors were at odds with medical geneticists, and sometimes even with other genetic counselors. Professional relationships withered from the heated arguments. Both sides were armed with lawyers. Assets needed to be divided. It was not pretty (although the NSGC listserv is a wonderful resource, I am half-relieved it was not operating in 1992). Even now, I suspect this issue still raises ghosts of bad feelings, and some broken friendships have never healed.
When the vote finally came in 1992, ABMG membership approved joining ABMS, 977 in favor and 200 against. Fortunately, wiser heads prevailed. Ed Kloza, Ann Walker, and a few other unsung heroes negotiated a separation deal with ABMG and guided us through the birthing pains of establishing a new professional identity.
We felt like teenagers who had been kicked out of the house. Maybe our parents didn’t want us, but now we could be independent and grow up on our own. We were young and bright, with a bit of drag strip courage and a world of potential in front of us. Many genetic counselors continued to work in traditional settings and maintained close relationships with medical geneticists. But, freed from the bonds that tied us to medical geneticists, we were captain of our own ship, ready to set sail on uncharted professional seas.
The American Board of Genetic Counseling (ABGC) was incorporated in February, 1993. ABGC and NSGC are now firmly established as critical leadership organizations for genetic counselors. New employment opportunities unfolded like the wings of a butterfly emerging from a cocoon. The genetic counseling profession is now entrenched in the daily practice of medicine, and our services are sought by many medical specialties. The separation of genetic counselors from ABMG proved to be the best thing
that ever happened to North American genetic counselors.
Medical geneticists on the other hand, were more cautious. I suspect that they were still caught up in the traditional model of medical genetics service delivery and did not respond as quickly to changes in genetic technology. They are just now starting to catch up with genetic counselors in establishing working relationships beyond pediatrics and obstetrics.
Here we are in 2010 with new service models presenting themselves. As it was in 1992, our profession is torn by these issues. I do not know what the right answer is. But opportunity is knocking and asking us to take another journey with unfamiliar travelers. We can head down this uncertain path – or we can be left standing at the door.
For more on the ABMG restructuring, see:
“ABGC incorporates” Perspectives in Genetic Counseling 1993;15(1):1
Gettig B “Restructuring of ABMG: NSGC to move toward healing; vision” Perspectives in Genetic Counseling 1992/3;14(4):3
Epstein CR “Editorial: Organized Medical Genetics at a crossroad” American Journal of Human Genetics 1992;41:231-4
Heimler A, Benkendorf J, Gettig E, Reich S, Schmerler S, Travers H “Opinion: American Board of Medical Genetics restructuring: make an informed decision” American Journal of Human Genetics 1992; 51:v-viii
Kloza EM “ABMS report…evaluating the counselors’ status” Perspectives in Genetic Counseling 1992;14(1):7
Restructuring Committee “Review and update of ABMG status” Perspectives in Genetic Counseling 1992;14(2):1
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Thanks for this post Bob. As you know, I fall on the side that sees the opportunity for a “journey with unfamiliar travelers” as a positive, exciting and slightly nerve-wracking challenge. We often hear that people choose to enter the field of genetics because they love the opportunity for constant learning and change. The way I see it, the advent of online and DTC testing and the subsequent need for development of new service models simply represents a different type of opportunity for learning and change. It is great to be reminded that this is not the first time our community has had to overcome this kind of challenge.
I too support the “uncertain path”. In considering which path to take I can’t help but think that as the field of genetics evolves to include complex diseases and pharmacogenomics there will be more use of genetic and genomic testing outside of the classical genetics clinic than inside. Primary care physicians and pharmacists will take on an increasing role in delivering genetic/genomic results and genetic counselors will be forced to decide what role we want in the new millenium of genomic testing and then step forward and create it for ourselves.
One wonders….if we don’t travel the “uncertain path” and create a new role for ourselves and non-geneticist physicians become comfortable with genetics, will genetic counselors become obsolete?
I agree that we have to take risks and decide how our roles as genetic counselors will expand. The landscape of genetic testing is changing, and we are more equipped than our non-genetics counterparts to handle these challenges. I would argue that it is our obligation to take these risks, so that genetic information is disseminated in a non-alarmist fashion and patients make decisions based on accurately interpreted information. It is so exciting to be part of such a dynamic field. Thank you for this reminder of how far we’ve come!
To add the words of one famous Robert (Frost) to another (Resta):
“I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference”
And genetic counselors must continue to take the road less traveled with the same professionalism and entrepreneurship as in the past to meet the challenges of today.
And, by the way, it was almost 30 years ago, not 20. 🙂
Excellent article, Bob. But it was almost 30 years ago, not 20. 🙂
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