POLICY

The National Society of Genetic Counselors (NSGC) is pleased to offer its members the opportunity to request an ethics consult through its Ethics Inquiry Review Program (Program). Under the Program, members in good standing have the opportunity to request input from their peers on ethical questions arising under the NSGC Code of Ethics (Code) and encountered in their practice.

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.  

• Program Description
• Terms and Conditions of Ethics Inquiry Review 
• Ethics Advisory Group Members
• Additional Resources
• Code of Ethics

Ethics Inquiry Review Request Form

Program Description

NSGC Board of Directors appoints seven NSGC members and one non-member bioethicist advisor to serve on the NSGC Ethics Advisory Group (Group) each year.  The Group’s purpose is to serve as an educational resource to the Board and membership on matters involving ethical concerns arising under the Code. Generally, the Group: (i) reviews, updates, and applies the Code both to individual NSGC members in their practice as well as to NSGC in its management functions and interactions with members and the general public; and (ii) works to develop, maintain, and publish educational information regarding the range of ethical confronting genetic counselors.

As part of its function, the Group is available to respond to eligible inquires submitted through the Program. NSGC members in good standing that agree to abide by the terms of the Program, may submit a written ethics inquiry to NSGC seeking the Group’s insight into the interpretation and application of the Code to an ethical situation faced by the member. Inquiries must be based on an accurate and complete set of facts actually encountered by the member in the course of his or her practice. Inquiries must strictly adhere to HIPAA requirements and may not include any personally identifiable information (medical or otherwise) about a patient, patient’s relatives or friends, or other individuals or organizations and must not identify the member’s employer. Only inquiries seeking input with respect to the applicability of a specific section of the Code will be considered. Inquiries that do not meet the Program’s requirements will not be reviewed.

NSGC will review inquiries submitted through the Program and, if appropriate, refer them to the Group. A subcommittee of the Group will review each eligible inquiry and prepare a written response that applies the ethical requirements set forth in the Code to the facts described in the inquiry (Response). Inquiries will be reviewed and a response provided within three (3) weeks of the date of the request. 

Responses will not include specific advice or directives but are meant to provide NSGC members with information they can use in connection with developing a plan to handle the ethical issue in question. NSGC reserves the right, in its sole discretion, to (i) reject an inquiry for any reason; or (ii) decide not to issue a Response to an inquiry.

NSGC (through the Group) offers such Response as an educational tool and service to NSGC’s members. Neither NSGC nor the Group dispenses practice, legal, medical, employment or any other type of advice or opinion and members participating in the Program may not rely on any Response received. Additionally, variations in practice, which take into account the needs of individual patients, genetic counselors, institutions and the resources and limitations unique to the health care setting, may warrant approaches that differ from the information provided in the Response. Therefore, information contained in a Response should not be interpreted as an exclusive interpretation of the Code nor the exclusive appropriate course of action. Reliance on any information included in the Response does not guarantee a particular outcome.

Ethics Advisory Group Members - 2024

Ethics Inquiries: Additional Resources

American Journal of Bioethics (AJOB)
bioethics.net

AJOB editors' blog
blog.bioethics.net

The President's Council on Bioethics
Bioethics.gov

NIH Bioethics Resources on the Web
www.nih.gov/sigs/bioethics

NHGRI Online Bioethics Resources
genome.gov/10001744

Hastings Center
www.thehastingscenter.org

Kennedy Institute of Ethics
kennedyinstitute.georgetown.edu

University of Minnesota Center for Bioethics
www.bioethics.umn.edu

University of Pennsylvania Center for Bioethics
bioethics.upenn.edu

Kennedy Institute of Ethics/NRCBL Library and Information Services
https://kennedyinstitute.georgetown.edu/