[Durgical](https://durgical.com/en/) › [DurgiPedia](https://durgical.com/en/durgipedia/) › [Medical ethics](https://durgical.com/en/medical-ethics/) › [Confidentiality and truth-telling](https://durgical.com/en/medical-ethics/areas/communication/) › Genetic information: testing, confidentiality and relatives

# Genetic information: testing, confidentiality and relatives

- Topic

A genetic result also speaks about relatives: it calls for consent and counselling, and for thought about when and how to inform them.

Updated Nov 13, 2026

## Key points

- Genetic results tell about relatives: one person's result can change the monitoring of others.
- Specific consent and genetic counselling whenever a test is offered and when the result is interpreted.
- Right not to know: the person decides whether they want to learn the result (UNESCO 2003, art. 10).
- Relatives at risk: first encourage the patient to inform them; disclose without consent only for a serious, avoidable harm greater than that of disclosing.
- Colombia: Law 23 of 1981, art. 38, item e: disclosure to those concerned when a serious hereditary disease endangers the spouse or offspring.
- Children: predisposition tests only with a clear clinical indication and if knowing the result is in their best interests.

## What it is

Genetic information has features that make it especially sensitive: it identifies the person, can predict future disease, can never be fully anonymised and, above all, gives information about biological relatives who were not tested. That is why international standards call for specific informed consent, genetic counselling before and after the test, respect for the right not to know, and protection against discrimination by employers and insurers. The most examined dilemma is that of relatives at risk: the patient should be encouraged to tell them, and the doctor discloses without consent only if silence means a serious harm, avoidable only by disclosure and clearly greater than the harm of disclosing (WMA Declaration of Reykjavik, 2019). In Colombia, Law 23 of 1981 (art. 38, item e) allows disclosure of a secret to those concerned when a serious hereditary disease endangers the life of the spouse or offspring.

## Key facts

- Reykjavik (WMA, 2019): testing is done primarily for the benefit of the patient and should not be wider in scope than its purpose needs.
- Reykjavik: before the test, it is agreed what to do with additional (incidental or secondary) findings and how results with implications for relatives will be handled.
- Reykjavik: no one should be discriminated against on the basis of their genetic makeup, including in employment and insurance.
- UNESCO, International Declaration on Human Genetic Data (2003), art. 14: identifiable genetic data are not disclosed to third parties such as employers or insurers, except for important public interest reasons or with consent.
- Pate v. Threlkel (Florida, 1995): the doctor has a duty to warn the patient that their hereditary disease may affect their children; the duty is met by informing the patient.
- Safer v. Estate of Pack (New Jersey, 1996): the duty to warn of an avertible genetic risk extends to the immediate family, and the court did not accept that informing the patient is always enough.

## In clinical practice

- A patient with a high-risk hereditary cancer variant who does not want to tell her sister: her fears are explored, a letter for relatives and counselling support are offered; disclosure without consent is the last resort.
- Before sequencing a broad panel, the patient is asked which incidental findings they want to know, and it is written down.
- A healthy child of a parent with an adult-onset disease with no preventive treatment: in general, testing waits until the child can decide for themselves.
- An employer asking workers for genetic tests is processing sensitive health data; the doctor does not take part without explicit authorisation and a legitimate purpose.
- Finding non-biological paternity in a family study: this is delicate information that is not disclosed routinely; it is planned with counselling before the test.

## Legal framework in Colombia

- Law 23 of 1981, art. 38, item e: a secret may be disclosed to those concerned when irremediable physical defects or serious infectious or hereditary diseases endanger the life of the spouse or offspring.
- Law 23 of 1981, art. 37: outside the legal cases, the doctor keeps secret everything learnt through the profession.
- Constitution, art. 15, and Law 1581 of 2012, art. 5: Law 1581 does not name genetic data, but data relating to health are sensitive and processing them requires explicit authorisation, except for the exceptions in art. 6.
- No specific Colombian law on clinical genetic testing was found on the official sites; these general rules and the international principles apply.
- Official texts checked on 2026-11-13 at funcionpublica.gov.co.

## Test yourself

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

## Why is genetic information especially sensitive?

Because it identifies the person, can predict disease, cannot be fully anonymised and gives information about biological relatives who were not tested.

## According to the WMA, when may a doctor disclose a genetic result to a relative without the patient's consent?

When silence means a serious harm, avoidable only by disclosure and clearly greater than the harm of disclosing; usually after discussing it with the patient and, if possible, an ethics committee.

## Which Colombian rule allows a secret to be disclosed because of a serious hereditary disease?

Law 23 of 1981, art. 38, item e: disclosure to those concerned when a serious hereditary disease endangers the life of the spouse or offspring.

## What is the right not to know in genetics?

The person's right to decide whether or not to learn the results of their test; the 2003 UNESCO Declaration includes it in art. 10.

## When is genetic predisposition testing of a child recommended?

Only if there is a clear clinical indication and knowing the result is in the child's best interests (WMA Declaration of Reykjavik).

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## Connections

## Related 5

- [The limits of confidentiality: duty to warn and legal disclosure](https://durgical.com/en/medical-ethics/the-limits-of-confidentiality-duty-to-warn-and-legal-disclosure/)
- [Professional secrecy and confidentiality](https://durgical.com/en/medical-ethics/professional-secrecy-and-confidentiality/)
- [Privacy and habeas data in health](https://durgical.com/en/medical-ethics/privacy-and-habeas-data-in-health/)
- [Ley 1581 de 2012: personal data in health](https://durgical.com/en/medical-ethics/ley-1581-de-2012-personal-data-in-health/)
- [Therapeutic privilege and the right not to know](https://durgical.com/en/medical-ethics/therapeutic-privilege-and-the-right-not-to-know/)

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Educational content on ethics and health law; not legal advice. Laws and case law change: each page links the official text and says when it was last checked. For a real case, read the text in force and ask a lawyer or the medical ethics tribunal.

Sources: [WMA Declaration of Reykjavik – Ethical Considerations regarding the Use of Genetics in Health Care](https://www.wma.net/policies-post/wma-statement-on-genetics-and-medicine/) (World Medical Association, 2019); [International Declaration on Human Genetic Data](https://www.unesco.org/en/legal-affairs/international-declaration-human-genetic-data) (UNESCO, 2003); [Pate v. Threlkel, 661 So.2d 278 (Fla. 1995)](https://biotech.law.lsu.edu/cases/genetics/Threlkel.htm) (LSU Law Center, Medical and Public Health Law Site, 1995); [Safer v. Estate of Pack, 677 A.2d 1188 (N.J. Super. App. Div. 1996)](https://biotech.law.lsu.edu/cases/genetics/Safer.htm) (LSU Law Center, Medical and Public Health Law Site, 1996); [Ley 23 de 1981, por la cual se dictan normas en materia de ética médica](https://www.funcionpublica.gov.co/eva/gestornormativo/norma.php?i=68760) (Función Pública, Gestor Normativo, 1981); [Ley Estatutaria 1581 de 2012, por la cual se dictan disposiciones generales para la protección de datos personales](https://www.funcionpublica.gov.co/eva/gestornormativo/norma.php?i=49981) (Función Pública, Gestor Normativo, 2012).

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License: CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). Cite as: DurgiPedia (durgical.com), https://durgical.com/en/medical-ethics/genetic-information-testing-confidentiality-and-relatives/
