Patients

Not Ready to Call it Quits

After 18 years in clinical genetics and 15 years of teaching students at Sarah Lawrence College, I will have officially retired from my academic life this August. As many of my dear friends and colleagues know, I am leaving for personal reasons. Truthfully, I am ready to take my career in a different direction. I have loved my time as a Genetic Counseling Program Director, but I am ready to step out of the narrowly- defined parameters of academia. I want to foster the pioneering spirit of genetic counseling by helping to shape its future in the genomic age.

I am in constant awe of genomic medicine and its power to heal and prevent disease. New tests are developing at lightning speed. These exciting changes herald a need for a paradigm shift in the way genetic services are provided. As more tests are developed and offered outside of the academic medical center model, we as genetic counselors need to explore new ways in which to maintain the humanity in a process that is top-heavy with information. As one example, genetic counselors can teach primary care providers—the nurses, nurse practitioners, physicians’ assistants—what to say to patients; they can help them identify the right test for the right patient or how to make the appropriate referral.

Thirty-five years ago, when I started graduate school, much of the applied science we have now was fantasy. As the information and applications of genomics explode, there are no limits on what we can do with that knowledge. Yet my experience with each new test has led me to believe that whatever the newest technological breakthrough, the need for acknowledging and hearing the many stories of patients and families around that technology has not changed. I have experienced this in a many arenas: patients in the clinic adjusting to a prenatal diagnosis of Down Syndrome, inmates in the Bedford Hills Correctional Facility requesting information about BRCA testing for affected family members, students in Guatemala’s Abriendo Oportunidades program discussing the impact of Spina Bifida on the family they left back in the local village. As always, there is need for vigilance in critically evaluating new technology in terms of its value to society, to patients. I want to use my knowledge and experience as a bellwether in this arena, being open-minded and skeptical at the same time, making sure we move forward with the ethical tenets of genetic counseling in mind.

For me, Counsyl epitomizes the best in the fast-paced world of genomics (and boy, is it fast!). The ethos of critical thinking, of caring, of doing the “right thing,” has been clear to me since I first heard about the Company a few years ago. Since I began my role as a consultant to Counsyl this spring, I have been impressed by how well people in the company listen, how respectful they are of the opinions of others and how thorough the internal research process is to really be sure that a product launch is being handled in a responsible way.The Counsyl team has embraced me with open arms and pulled me into projects that allow me to use my skills in a completely different and challenging way.

I have moved to sunny California and am adjusting to my new life on the West Coast. As far as work, some say I should call it quits, retire after a long fulfilling career. But I can’t. Not yet, as I feel there is more to do.

Caroline LieberCaroline Lieber is Director of Sarah Lawrence College’s Joan Marks Graduate Program in Human Genetics, the country’s first and largest graduate program in genetic counseling. She is actively involved in professional education and recently traveled to Guatemala to assess the provision of genetic counseling services. After receiving the NSGC Jane Engelberg Memorial Fellowship in 2005, she worked on a project entitled “Narratives of Heritability: Privileging Family Stories as Genetic Understanding,” the results of which were published in 2011. Thereafter, Caroline and three students founded GenetAssist, an organization of genetic counselors who travel internationally to assist with genetics education and service implementation. Counsyl is thrilled to have Caroline on the team!

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