Ethical principles

Ethical principles

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:

• 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.

• 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.

• as a result of genetic testing, an individual’s result may disclose the genetic status of another family member (eg a monozygotic [identical] twin) 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 diseases
• 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.

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.