Ethical issues in genetics
and genomics
Section 2
Lesson Plan: Ethical issues in genetics and
genomics – considering how people
make decisions
© 2012 NHS National Genetics Education and Development Centre
Genetics and genomics for healthcare
www.geneticseducation.nhs.uk
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?
© 2012 NHS National Genetics Education and Development Centre
Genetics and genomics for healthcare
www.geneticseducation.nhs.uk
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?
© 2012 NHS National Genetics Education and Development Centre
Genetics and genomics for healthcare
www.geneticseducation.nhs.uk
Biomedical ethical principles
• Respect for autonomy
• Non - maleficence (avoiding harm)
• Beneficence (doing good)
• Justice (act fairly)
© 2012 NHS National Genetics Education and Development Centre
Genetics and genomics for healthcare
www.geneticseducation.nhs.uk
Ethical issues in practice
• Confidentiality
• Privacy
• Truth telling
• Duty of care
• Right to know versus right not to know
© 2012 NHS National Genetics Education and Development Centre
Genetics and genomics for healthcare
www.geneticseducation.nhs.uk
Ethical issues in practice
• When in your practice might you need to
consider these issues?
© 2012 NHS National Genetics Education and Development Centre
Genetics and genomics for healthcare
www.geneticseducation.nhs.uk
Examples of ethical issues
• Consent
• Disclosure of
information
• Discordance
• Testing on children
– Benefits should
outweigh the harm
– Diagnostic vs.
predictive
© 2012 NHS National Genetics Education and Development Centre
• Compliance
• Predictive testing
• Cardiology
investigations
• Pre-natal diagnosis
• Confidentiality
Genetics and genomics for healthcare
www.geneticseducation.nhs.uk