The rights of family members of genomic data

Table Of Contents

Overview #

Genomic data is fundamentally different from many other forms of personal data because it is shared biologically among relatives. An individual’s genome can reveal information not only about themselves but also about parents, children, siblings, and more distant relatives. This creates a complex question: do family members have rights over genomic information generated from another person’s biological sample or genomic data?

The issue became widely recognised through the case of Henrietta Lacks, whose cells were taken in 1951 during medical treatment at Johns Hopkins Hospital without her knowledge or consent. These cells, known as the HeLa cell line, became one of the most important research tools in modern biomedical science. Decades later, Henrietta Lacks’ family learned that her cells had been commercialised and that genomic information derived from HeLa cells had been publicly released without meaningful family involvement.  

The Henrietta Lacks case illustrates a central tension among

  • Individual autonomy: A person has rights over decisions concerning their biological samples and genetic information.
  • Familial interests: Genetic data may reveal information about relatives who did not consent to its use.
  • Scientific progress: Sharing genomic resources can accelerate discoveries benefiting society.
  • Justice and trust: Historical exploitation of vulnerable populations has affected confidence in biomedical research.  

Why genetic data creates family rights issues #

A person’s genome contains information about inherited disease risks; carrier status for genetic conditions; ancestry and biological relationships; susceptibility to certain diseases.

Genetic data has a relational nature, as they may unintentionally reveal that a sibling has a high probability of carrying a pathogenic variant; or a child may inherit a medically relevant condition.

This creates situations where there are conflicting interests at stake: mainly individual interest (right to privacy or right not to know) versus Family interest (right to know medically relevant information)

Henrietta Lacks case #

Henrietta Lacks’ cervical cancer cells were collected without informed consent at a time when US research regulations did not require the protections now considered standard. The HeLa cell line became commercially valuable and was distributed worldwide.

The HeLa genome was published in 2013 by European researchers without prior consultation with the Lacks family. Following concerns raised by the family, an agreement was reached with the US National Institutes of Health (NIH) establishing family participation in decisions concerning access to HeLa genomic data.

The case demonstrates that:

a) Consent may need a family dimension. Traditional informed consent assumes that biological materials belong only to the individual donor. Genomics challenges this model because information derived from samples may affect relatives.

b) Governance may be preferable to ownership models. Many scholars argue that genetic information should not be treated as jointly owned property by families. Instead, governance mechanisms may better address consultation with family members and responsible sharing.

c) Historical injustice matters. The Henrietta Lacks case is also a case about racial inequity (she was an Afro American woman) and power asymmetry between researchers and participants.

d) Commercialisation of human biological materials, transparency and trust: the case also triggered the debate on the commercial use of human samples, the importance of transparency by research community, and the difficulties of building trust between patients and researchers.  

Key ethical, legal and societal implications

  • Respect for autonomy. A central question is whether individuals can provide valid consent for research uses of genomic data when those uses may affect relatives. The questions are: should relatives be informed before genomic data sharing? Can one person consent on behalf of genetic relatives?
  • The Right to Know and the Right Not to Know. Genomic information creates conflicts between Right to know that family members might have about possible diseases versus Right not to know upon the individual.
  • Disclosure of Genetic Information to Relatives: Healthcare professionals face dilemmas when a patient refuses permission to inform relatives. Usually, they can contact relatives only under defined circumstances and through consent procedures established at recruitment.
  • Justice and Benefit Sharing: thinking of Henrietta Lacks’ case, the questions relate to whom benefits from genomic research and whether families should receive compensation 
  • Consent rights for family members: the key point is whether relatives have consent rights over another person’s genetic data. Usually the answer is no, but familyinterests should be considered in governance frameworks (dynamic consent? Broad consent?  Involvement of family?)
  • Equitable research practices, transparency and trust by research community

Legal and ethical international and EU sources #

  • General Data Protection Regulation (GDPR) – Regulation (EU) 2016/679: Genetic data are classified as a special category of personal data under Article 9 GDPR.  GDPR generally protects the individual whose genetic data are processed, not relatives as independent rights holders. Relatives may be affected by processing of another person’s genomic data, but GDPR does not establish a specific “family genetic privacy right”. This creates a gap between individual data protection law and the family nature of genomic information.

BBMRI-ERIC resources #

Publications #

    • Saunders G, Baudis M, Becker R, Beltran S, Béroud C, Birney E, Brooksbank C, Brunak S, Van den Bulcke M, Drysdale R, Capella-Gutierrez S, Flicek P, Florindi F, Goodhand P, Gut I, Heringa J, Holub P, Hooyberghs J, Juty N, Keane TM, Korbel JO, Lappalainen I, Leskosek B, Matthijs G, Mayrhofer MT, Metspalu A, Navarro A, Newhouse S, Nyrönen T, Page A, Persson B, Palotie A, Parkinson H, Rambla J, Salgado D, Steinfelder E, Swertz MA, Valencia A, Varma S, Blomberg N, Scollen S.. Author Correction: Leveraging European infrastructures to access 1 million human genomes by 2022. Nat Rev Genet. 2019. https://doi.org/10.1038/s41576-019-0178-3
    • Goisauf M, Akyüz K, Martin GM, Moving back to the future of big data-driven research: reflecting on the social in genomics. Humanit Soc Sci Commun 7, 55 (2020). https://www.nature.com/articles/s41599-020-00544-5
    • Akyüz K, Goisauf M, Chassang G, Kozera Ł, Mežinska S, Tzortzatou-Nanopoulou O, Mayrhofer MT.. Post-identifiability in changing sociotechnological genomic data environments. Biosocieties. 2023. https://doi.org/10.1057/s41292-023-00299-7
    • Royo R, Garcia E, Schlünder I, Hilmarsen C, Thomsen MK, Cauët E, Jensen SK, Giardina S, Hebrant A, Raicevic Toungouz G, Van Den Bulcke M, Arenas J, Christiansen CF, Hovig E, Holub P, Valencia A, Capella-Gutierrez S.. Genomic data sharing in research across Europe: legal challenges and upcoming opportunities within the European Health Data Space. Eur J Public Health. 2025. https://doi.org/10.1093/eurpub/ckaf070

    Webinars #

    Public statements and consultations #

    External resources #

    • HELA100: Join The Lacks Family as we honor her legacy through HELA100: Henrietta Lacks Initiative by educating future generations on the impact of her HeLa cells.
    • National Institutes of Health. “The NIH-Lacks Family Agreement”

    Relevant literature #

    • Skloot R. The Immortal Life of Henrietta Lacks. Crown Publishers, 2010.
    • Harmon A. “A Family Consents to a HeLa Genome Study.” The New York Times, 2013.
    • Knoppers BM. Consent to ‘personal’ genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent. EMBO Rep. 2010 Jun;11(6):416-9. doi: 10.1038/embor.2010.69. Epub 2010 May 7. PMID: 20448662; PMCID: PMC2892328.
    • Lucassen A, Gilbar R. Disclosure of genetic information to relatives: balancing confidentiality and relatives’ interests. J Med Genet. 2018 Apr;55(4):285-286. doi: 10.1136/jmedgenet-2017-104843. Epub 2017 Nov 10. PMID: 29127257.
    • Tiller J, Bilkey G, Macintosh R, O’Sullivan S, Groube S, Palover M, Pachter N, Rothstein M, Lacaze P, Otlowski M. Disclosing genetic information to family members without consent: Five Australian case studies. Eur J Med Genet. 2020 Nov;63(11):104035. doi: 10.1016/j.ejmg.2020.104035. Epub 2020 Aug 14. PMID: 32805446.
    • Mello, Michelle M. and Wolf, Leslie E., The Havasupai Indian Tribe Case – Lessons for Research Involving Stored Biologic Samples (June 10, 2010). New England Journal of Medicine, Forthcoming, Georgia State University College of Law, Legal Studies Research Paper No. 2010-12, Available at SSRN: https://ssrn.com/abstract=1626200
    •  Amicia Phillips, Pascal Borry, Ine Van Hoyweghen, Danya F. Vears, Disclosure of genetic information to family members: a systematic review of normative documents, Genetics in Medicine, Volume 23, Issue 11, 2021, Pages 2038-2046, ISSN 1098-3600, https://doi.org/10.1038/s41436-021-01248-0
    • Rothstein, M. A. (2025). Provider Disclosure of Genetic Risks to a Patient’s Relatives Over the Objection of the Patient: Still a Bad Idea. The American Journal of Bioethics, 25(10), 27–29. https://doi.org/10.1080/15265161.2025.2543730

    Acknowledgments #

    The work done stems from research conducted in the context of CY-biobank project (Biobanking and the Cyprus Human Genome Project),  which has received funding from the European Union’s Horizon 2020 research and innovation programme under Grant agreement ID: 857122. The project started on 1 October 2019 and ends on 30 September 2027.

    conducting research, ELSI, ethics, Henrietta Lacks, trust
    Updated on 20 August, 2026