From DNA to Donors: Expert Q&A on the role of genetic counselors in gamete banks

On this Genetic Counselors Awareness Day, we would like to highlight one of our own. Rawan Awwad, MS, CGC joined the Fairfax EggBank team in 2022 as the Director of Genetic Counseling. In this Q&A session, she explains what she does and sheds light on the role of genetic counselors in gamete banks.

Q: Can you tell us what genetic counselors do?

A: Certainly. Genetic counselors (GCs) are masters-level trained healthcare professionals with expertise in genetics, clinical patient care, and psychosocial counseling. Many are board certified by the American Board of Genetic Counseling and may be required to hold licensure in the state(s) where they practice and/or where they see patients.

GCs are best known for their ability to simplify complex genetic and genomic information in order to educate their patients/clients. As such, they are often hired in positions that require assessment and analysis of medical and family histories, genetic information and recurrence risks, as well as options for genetic testing.

They provide pre-test counseling to facilitate informed consent for genetic testing, as well as post-test counseling to interpret the significance of results and help patients and families cope with genetic diagnoses and health risk management. They can also be involved in operations that do not involve direct patient care.

GCs work in various settings including clinical, industry, education, research, public health, and others while often working collaboratively with other professionals such as clinical geneticists, physicians, nurses, social workers, lawyers, information technology experts, marketing professionals, and business development specialists.

Q: What is the role of a genetic counselor in a gamete bank?

A:  Great question. I would say that this depends on the gamete bank and its operations and needs. In general, a genetic counselor can be involved in:

1. Review and assessment of genetic test results: this includes summarizing gamete donors’ genetic and chromosomal test results and helping to provide a suitability match between the intended parent(s) and a donor of interest based on these results.
2. Management of medical updates: this includes the investigation and dissemination of medical updates that donors, the parents of donor-conceived children, or donor-conceived people  report . The GC assesses the risk for recurrence of this condition, if any, and communicates that risk to all stakeholders.
3. Serving as an in-house genetic expert: in some cases, additional genetic testing is requested for a donor. GCs review these requests for appropriateness and work with their team to coordinate testing where approved. GCs also address various genetic inquiries from intended parents, clinicians, and donors.
4. Donor screening: GCs can be involved in obtaining and assessing donor family histories as well as aiding in decisions on donor inclusion/exclusion based on published screening guidelines.
5. Providing genetic counseling: GCs in a gamete bank are available to provide post-test counseling sessions to donors regarding their positive genetic testing results. They may also be available to provide consultations to intended parents who have questions on donor family histories and/or genetic test results.

Q: What are some challenges that GCs in gamete banks face?

A: A challenge is posed by the extreme variability in carrier screening products on the market. It’s a standard of care to have both recipients and donors pursue carrier screening as part of third-party reproduction, often using different carrier screening tests. This creates a discrepancy in the number and types of genes screened which may warrant additional carrier screening. This incurs additional costs for recipients and delays their cycles. In addition, as carrier screening panels continue to increase in size and complexity, there are implications to consider such as the appropriateness of an additional testing request on a mild condition, and the significance of a carrier result associated with potential manifestation of symptoms.

Q: What are your favorite parts about your role as a GC in a gamete bank?

A: I enjoy thinking through complex cases, working collaboratively with my team members, and considering ways to improve processes to the benefit of clients, donors, and donor-conceived persons. I also enjoy connecting with other GCs working in this field as we often find that we face the same unique challenges.

Q: Are there any last thoughts about GCs in gamete banks that you want to share?

A: Yes. Seeing how much my team relies on me with issues concerning genetic testing, genetic risks, and the investigation and dissemination of medical updates, I think it’s vital for a gamete bank to have in-house genetic counseling. GCs often bridge the gap between the complexity of all this information and the client’s understanding of it. Given that most recipients have gone through a lot emotionally, financially, and physically before considering a gamete donor, having a professional that will deliver sensitive and informative care is crucial.