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The ethical principles that guide all medical care apply in genomics. However, ethical dilemmas arise when there is tension or conflict between the rights of different family members. Key ethical principles include:1
- Justice – Patients should be treated equally, and there should be equity of access to services regardless of place of residence, ethnicity, gender, religion, age or disability.
- Respect for autonomy – The right of an individual to self-determination, including privacy and confidentiality.
- Beneficence – Taking positive action to do good.
- Non-maleficence – Do no harm.
- There may be tension when these principles are considered with respect to the right of an individual to:
- know, or not to know, information relevant to their own health (autonomy)
- disclose, or not to disclose, personal information (privacy)
- make an informed decision regarding genetic testing.
Genetic counselling emphasises that an autonomous choice be made; that is, a choice that is informed and reflective of the individual’s own values, and made freely (without coercion). However, ethical dilemmas may arise. For example:
- as a result of genetic testing, an individual’s result may disclose the genetic status of another family member (eg a monozygotic [identical] twin)2 who has not had testing (and may not wish to)
- an individual refuses to disclose to other family members that they are at risk of particular diseases3
- ·parents request that their child (<18 years of age) be tested for an adult-onset condition where there is no health benefit for the child, thus affecting the child’s future autonomy.4
In any of these situations, it is important to explore with the patient the potential harms and benefits, and the reasons for their request. Referral to genetic services for counselling is strongly recommended.
Resources for general practitioners
Centre for Genetics Education, Fact sheet 19: Ethical issues in human genetics and genomics
Financial Services Council, FSC Standard no. 16: Family medical history policy
National Health and Medical Research Council, Genetic discrimination