Genetics and genomics for healthcare © 2012 NHS National Genetics Education and Development Centre Ethical issues in genetics and genomics Section 2 Lesson Plan: Ethical issues in genetics and genomics – considering how people make decisions

Genetics and genomics for healthcare © 2012 NHS National Genetics Education and Development Centre Specific issues The whole family is often the ‘client’ There needs to be consideration of the impact of any action or inaction on others in the family How do you manage confidentiality when dealing with several family members? What is your role in dealing with potential and future issues as well as current disease?

Genetics and genomics for healthcare © 2012 NHS National Genetics Education and Development Centre Ethical models Utilitarian – best for the majority – e.g. what is best for the community Code of conduct – doing your duty – e.g. sometimes not always the best option Virtue Ethics – e.g. how does a person act?

Genetics and genomics for healthcare © 2012 NHS National Genetics Education and Development Centre Biomedical ethical principles Respect for autonomy Non - maleficence (avoiding harm) Beneficence (doing good) Justice (act fairly)

Genetics and genomics for healthcare © 2012 NHS National Genetics Education and Development Centre Ethical issues in practice Confidentiality Privacy Truth telling Duty of care Right to know versus right not to know

Genetics and genomics for healthcare © 2012 NHS National Genetics Education and Development Centre Ethical issues in practice When in your practice might you need to consider these issues?

Genetics and genomics for healthcare © 2012 NHS National Genetics Education and Development Centre Examples of ethical issues Consent Disclosure of information Discordance Testing on children – Benefits should outweigh the harm – Diagnostic vs. predictive Compliance Predictive testing Cardiology investigations Pre-natal diagnosis Confidentiality