The NSGC Ethics Advisory Group (EAG) is an education resource available to NSGC members. We provide guidance for interpreting and applying the NSGC Code of Ethics to ethical issues you may encounter in your work. Ethical questions submitted to the EAG may relate to a variety of scenarios including clinical cases, workplace situations, laboratory medicine, and research studies. The EAG consists of selected volunteers who have a diverse set of clinical backgrounds and ethics expertise in genetic counseling.
Q: How do I submit an ethics inquiry?
A: There is a submission form available on the NSGC website: https://www.nsgc.org/Policy-Research-and-Publications/Code-of-Ethics-Conflict-of-Interest/Ethics-Consult-Request. All submissions are confidential. Your details (such as contact information) will be known by the NSGC liaison who will redact them before sharing the submission with the EAG members. Written inquiries should not contain any personally identifiable information related to the case in question, including patients’ names or the inquiring member’s employer. Only EAG members will have access to anonymized submissions and responses.
Q: What happens once I submit an ethics inquiry?
A: The appointed NSGC liaison will receive your submission, anonymize it, and share it with the EAG. The EAG members will review and discuss your submission and provide a written response to the NSGC liaison within 2-3 weeks.
Q: How does the EAG formulate a response to the inquiry?
A: All members of the EAG are given an opportunity to respond to the inquiry, after which the chair or designee within the committee formulates the final written response from the group. Responses may outline ethical principles or considerations related to specific points in the NSGC Code of Ethics, pertinent questions to consider, and possible suggestions about other types of professionals who could be consulted (e.g., privacy officer, lawyer). Responses do not include specific advice or directives but are meant to provide NSGC members with information they can use to develop a plan to address the ethical issue/s in question.
Q: What types of inquiries have been requested?
A: The EAG welcomes brief questions and is also happy to review detailed cases. For example, NSGC members have submitted inquiries that involve ethical questions related to privacy/confidentiality, informed consent, disclosure of unexpected test results, genetic testing of minors, conflict of interest, and potential duty to warn. However, only inquiries seeking input about the applicability of the NSGC Code of Ethics will be considered.
Q: Does the EAG only review case inquiries?
A: No! We also review NSGC Practice Guidelines and Practice Resources before they are published. We review the Code of Ethics every few years to ensure it is up to date. We participate in the NSGC Annual Conference with presentations related to ethical issues. Finally, we act as a liaison to the NSGC Board of Directors when needed.
Q: Who is on the EAG currently? How do I become a member?
A: The current members are listed here: https://www.nsgc.org/Policy-Research-and-Publications/Code-of-Ethics-Conflict-of-Interest/Ethics-Consult-Request#members. Membership is a 3-year term, and interested individuals are invited to apply each year during the NSGC’s volunteer application period (usually sometime in the Fall).
NSGC assumes no liability for any injury and/or damage to reputation, persons or property arising out of or related to participation in the Program or the implementation or reliance on any information included in a Response.
Acknowledgements: We would like to thank the current members of the 2022 Ethics Advisory Group: Taylor Berninger, Bill Campbell, Emily Dalton, Emily Higgs, Lauren Murphy, Beth Peshkin, and Rebecca Tryon, as well as immediate past members Caitlin Mauer and Amy Mueller for their contributions to this article.