Disclosing genetic information to family members without consent: Five Australian case studies

Tiller, Jane; Bilkey, Gemma A.; Macintosh, Rebecca; O'Sullivan, Sarah; Groube, Stephanie; Palover, Marili; Pachter, Nicholas; Rothstein, Mark A.; Lacaze, Paul; Otlowski, Margaret

doi:10.1016/j.ejmg.2020.104035

Cited by 10 publications

(3 citation statements)

References 12 publications

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“…Contrastingly, other countries focus their policies not on patients but instead on clinicians. Australia, for instance, has legislation that creates an exception to the privacy obligation that clinicians owe patients, thus granting clinicians the discretion (rather than obligation) to breach patient con dentiality to inform at-risk family members in cases where disclosure would be necessary to lessen or prevent a serious threat to genetic relatives [8]- [10]. It should be noted however that this legislation does not apply uniformly across all Australian states and between the public and private healthcare contexts.…”

Section: Introductionmentioning

confidence: 99%

Clinician perspectives on policy approaches to genetic risk disclosure in families

Phillips,

Vears,

Van Hoyweghen

et al. 2024

Familial Cancer

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Genomic sequencing has emerged as a powerful tool with signi cant implications for patients and their relatives, however, empirical evidence suggests that effective dissemination of risk information within families remains a challenge. Policy responses to address this issue vary across countries, with Belgium notably lacking speci c regulations governing nondisclosure of genetic risk. In this study, we conducted semi-structured interviews with clinicians from Belgian clinical genetics centers to gain insight into their perspectives on policy approaches to the disclosure of genetic risk within families. Using real-world examples of legislation and court rulings from France, Australia, and the UK, we explored clinician viewpoints on the roles and responsibilities of both patients and clinicians in the family communication process. Clinicians expressed confusion regarding what was legally permissible regarding contacting atrisk relatives. While there was a consensus among participants that patients have a responsibility to inform their at-risk relatives, participants were hesitant to support the legal enforcement of this duty.Clinicians mostly recognized some responsibility to at-risk relatives, but the extent of this responsibility was a subject of division. Our ndings highlight the need for a comprehensive policy that clari es the roles and responsibilities of clinicians and patients to inform at-risk relatives. Furthermore, the study underscores the practical challenges clinicians face in supporting patients through the complex process of family communication, suggesting a need for additional resources and the exploration of alternative approaches to communication.

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Section: Introductionmentioning

confidence: 99%

Clinician perspectives on policy approaches to genetic risk disclosure in families

Phillips,

Vears,

Van Hoyweghen

et al. 2024

Familial Cancer

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“…Pencantuman persetujuan ini berpedoman pada tindakan atau langkah yang dilakukan untuk menyertakan secara resmi persetujuan tertulis dari pihak yang terkait dalam dokumen atau kontrak tertentu (Tiller, Bilkey, & Macintosh, 2020). Dalam konteks hibah, pencantuman persetujuan mengarah kepada memasukkan persetujuan secara eksplisit dari anggota keluarga sekandung lainnya selain penerima hibah ke dalam akta hibah.…”

Section: Urgensi Pencantuman Persetujuan Anggota Keluarga Sekandung S...unclassified

Kajian Pencantuman Persetujuan Anggota Keluarga Sekandung Selain Penerima Hibah dalam Akta Hibah Berdasarkan Kitab Undang-Undang Hukum Perdata

Nova,

Marnia,

Muhammad

2023

Peradaban.j.econ.bus

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The study emphasizes the necessity to safeguard the absolute share (legitime portie) of heirs during the donation process, emphasizing the crucial role of immediate family members' (children's) approval. The research delves into cases where the absence of consent from immediate family members leads to potential disputes. It aims to elucidate the significance of including the consent of immediate family members, beyond the recipient, in donation deeds. Employing Normative research, the study focuses on the application of legal principles and positive norms through legal and case study approaches. The findings highlight the pivotal role of immediate family members, classified as Group I heirs in the ab-intestato inheritance system, in providing consent for parental donations to biological children. Involving children in the donation process ensures the protection of their rights as potential heirs, with preventive and repressive legal safeguards provided by legislation and the right to legal recourse. Donation deeds incorporating consent from immediate family members offer enhanced legal certainty compared to those lacking such consent. Penelitian ini menekankan kebutuhan untuk melindungi bagian mutlak (legitime portie) dari ahli waris selama proses pemberian hibah, dengan menyoroti peran krusial persetujuan anggota keluarga sekandung (anak-anak). Dalam masyarakat sering terjadi kasus di mana ketiadaan persetujuan dari anggota keluarga sekandung dapat menyebabkan potensi sengketa. Tujuannya adalah untuk menjelaskan pentingnya mencantumkan persetujuan anggota keluarga sekandung, selain penerima, dalam akta hibah. Dengan menggunakan penelitian normatif, penelitian ini berfokus pada penerapan prinsip-prinsip hukum dan norma-norma positif melalui pendekatan undang-undang dan pendekatan studi kasus. Temuan penelitian menyoroti peran penting anggota keluarga sekandung, yang dikategorikan sebagai ahli waris Golongan I dalam sistem pewarisan ab-intestato, dalam memberikan persetujuan terhadap hibah orang tua kepada anak kandungnya. Melibatkan anak-anak dalam proses pemberian hibah memastikan perlindungan hak-hak mereka sebagai calon ahli waris, dengan perlindungan hukum preventif dan represif yang diberikan oleh undang-undang dan hak untuk menuntut. Akta hibah yang mencantumkan persetujuan dari anggota keluarga sekandung memberikan kepastian hukum yang lebih baik dibandingkan dengan yang tidak mencantumkan persetujuan tersebut.

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“…One mechanism to assist with increased cascade testing uptake is direct notification of BioTech 2023, 12, 45 2 of 13 at-risk relatives by HPs, with patients' consent. We note that disclosure of genetic results without patient consent is an important but separate topic, about which we have separately published [3].…”

Section: Introductionmentioning

confidence: 99%

Privacy Implications of Contacting the At-Risk Relatives of Patients with Medically Actionable Genetic Predisposition, with Patient Consent: A Hypothetical Australian Case Study

Tiller

Nowak

Boughtwood

et al. 2023

BioTech

Self Cite

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Genetic risk information has relevance for patients’ blood relatives. However, cascade testing uptake in at-risk families is <50%. International research supports direct notification of at-risk relatives by health professionals (HPs), with patient consent. However, HPs express concerns about the privacy implications of this practice. Our privacy analysis, grounded in a clinically relevant hypothetical scenario, considers the types of personal information involved in direct notification of at-risk relatives and the application of Australian privacy regulations. It finds that collecting relatives’ contact details, and using those details (with patient consent) to notify relatives of possible genetic risk, does not breach Australian privacy law, providing that HPs adhere to regulatory requirements. It finds the purported “right to know” does not prevent disclosure of genetic information to at-risk relatives. Finally, the analysis confirms that the discretion available to HPs does not equate to a positive duty to warn at-risk relatives. Thus, direct notification of a patient’s at-risk relatives regarding medically actionable genetic information, with patient consent, is not a breach of Australian privacy regulations, providing it is conducted in accordance with the applicable principles set out. Clinical services should consider offering this service to patients where appropriate. National guidelines would assist with the clarification of the discretion for HPs.

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Disclosing genetic information to family members without consent: Five Australian case studies

Cited by 10 publications

References 12 publications

Clinician perspectives on policy approaches to genetic risk disclosure in families

Clinician perspectives on policy approaches to genetic risk disclosure in families

Kajian Pencantuman Persetujuan Anggota Keluarga Sekandung Selain Penerima Hibah dalam Akta Hibah Berdasarkan Kitab Undang-Undang Hukum Perdata

Privacy Implications of Contacting the At-Risk Relatives of Patients with Medically Actionable Genetic Predisposition, with Patient Consent: A Hypothetical Australian Case Study

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