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# Ethics and society in medical genetics

Genetic information is predictive, shared with relatives and permanent; that raises questions of consent, privacy, discrimination and fairness.

Updated Nov 13, 2026

## Key facts

- The four principles of biomedical ethics apply: respect for autonomy, beneficence, non-maleficence and justice.
- Predictive testing of children for adult-onset conditions without childhood treatment (such as Huntington disease) is usually deferred until they can decide for themselves; testing is offered when it changes care in childhood (familial adenomatous polyposis, MEN2).
- Secondary findings: genome sequencing can reveal actionable variants unrelated to the reason for testing; patients should choose beforehand whether to learn them.
- Genetic results concern relatives too; when a clinician may warn at-risk relatives without consent is debated, and the usual approach is to support the patient in informing them.
- Genetic discrimination by insurers or employers is a real concern; some countries forbid it by law (in the United States, for health insurance and employment).

## In detail

- Genomic data can be re-identified even when names are removed, and consumer genetic tests share data under commercial terms.
- Large databases and artificial intelligence improve diagnosis but raise questions about consent, ownership and bias towards well-studied populations.
- Eugenics, the attempt to «improve» populations by controlling reproduction, led in the twentieth century to forced sterilisations and murder; modern genetics insists on individual, informed choice.
- Equity: access to genetic testing and therapies is unequal between and within countries.

**Also called**
Genetic privacy and discrimination, Predictive testing of children and secondary findings

## Clinical notes

- Before a genomic test, discuss what will and will not be reported, uncertain results, secondary findings and implications for family members.
- Adolescents should take part in decisions about their own testing as far as their maturity allows.

## Test yourself

Think of the answer, then tap the question to see it.

## Why is predictive testing for Huntington disease usually deferred in children?

There is no treatment that changes childhood care, and testing would take away the child's own future choice.

## What are secondary findings?

Actionable variants found by genome or exome sequencing that are unrelated to the reason for the test.

## What lesson does the history of eugenics teach?

Reproductive decisions must stay individual and informed; coercion in the name of population genetics led to grave abuses.

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## Connections

## Related conditions 1

- [Huntington disease](https://durgical.com/en/conditions/huntington-disease/)

## Related 4

- [Genetic counselling and risk assessment](https://durgical.com/en/biochemistry/topics/genetic-counselling-and-risk-assessment/)
- [Genetic tests: what each one finds](https://durgical.com/en/biochemistry/topics/genetic-tests-what-each-one-finds/)
- [Interpreting genetic variants: classes, evidence and databases](https://durgical.com/en/biochemistry/topics/interpreting-genetic-variants-classes-evidence-and-databases/)
- [DNA polymorphisms, linkage and DNA fingerprinting](https://durgical.com/en/biochemistry/topics/dna-polymorphisms-linkage-and-dna-fingerprinting/)

Educational information, not medical advice. For any symptom, see a health professional.

Sources: [What is genetic discrimination?: MedlinePlus Genetics](https://medlineplus.gov/genetics/understanding/testing/discrimination/) (MedlinePlus, US National Library of Medicine, 2026); [Genetic Discrimination](https://www.genome.gov/genetics-glossary/Genetic-Discrimination) (National Human Genome Research Institute (NHGRI), 2026); [Eugenics](https://www.genome.gov/genetics-glossary/Eugenics) (National Human Genome Research Institute (NHGRI), 2026); [What are the ethical issues surrounding gene therapy?: MedlinePlus Genetics](https://medlineplus.gov/genetics/understanding/therapy/ethics/) (MedlinePlus, US National Library of Medicine, 2026).

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