WHAT ARE THE ESSENTIAL ELEMENTS OF ETHICAL GENETIC COUNSELLING? Madelyn Peterson B.Pharm MA (Ethics) Certified Genetic Counsellor Program Convenor, Master of Science in Genetic Counselling

What are current ethical practice standards? From the ASGC Code of Ethics: The interests and wellbeing of the client are of primary importance. To respect the client’s confidentiality, rights to self-determination / individual autonomy (within limits of law, reason and economic constraints), as well as their personal history, values, culture and beliefs, genetic counsellors must strive to:

1. firstly, clarify their own professional role and determine a mutually acceptable agenda for any counselling session 2. provide genetic services to all individuals in a non-discriminatory manner 3. discuss relevant clinical and support information and options in plain language at the client’s level of understanding 4. ensure qualified interpreters are provided for counselling sessions as appropriate 5. recognise and respect that some individuals, particularly within certain cultural groups, do not primarily value their autonomy above their collective responsibility 6. follow currently acceptable informed consent processes and document these prior to genetic testing or recruitment to research studies 7. disclose confidential information only as consented by the client and / or required for medical management or as permitted / required by law 8. recognise when their own experiences, values and responses may influence the process and outcomes of a genetic counselling session and manage the situation appropriately 9. facilitate referrals to other competent professionals as appropriate 10. abstain from the exploitation of clients for personal or professional gain

What ethical problems commonly arise in practice? For the client: Prenatal screening and diagnostic test results create the need for the client to make a decision which most will find ethically challenging. A. Invasive diagnostic test (miscarriage risk) B. Continuation or termination of pregnancy No other single ethical challenge or dilemma is as common.

What ethical problems commonly arise in practice? For the genetic counsellor: The following occur occasionally or rarely: A. Conflict related to disclosure Familial cancer Predictive / presymptomatic tests reveal genetic status of others Identical twins (or triplets) Non-paternity Family secrets

What ethical problems commonly arise in practice? B. Conflict of beliefs / values / worldview between counsellor and client(s) Western Feminist vs traditional female role of some cultures Relationship-based vs Rights-based (care vs autonomy) Discordant appreciation of severity of a condition Sex selection for social or cultural reasons Particular client attributes / boundary violations

What ethical insights might the humanities offer? Challenge the dominant intuition / stance Raising alternative viewpoints for consideration Social science vs medical model Holistic wellbeing vs physical health Stakeholder opinions Very important for robust ethical deliberation and justification.