The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice

Morrissey, Clair; Walker, Rebecca

doi:10.1093/jmp/jhx034

Cited by 13 publications

(5 citation statements)

References 57 publications

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“…The societal concerns of collaborators who participated in the four Ethics Labs mirror a growing trend in scholarship about the collective good, fair access to precision health services and health costs (Prainsack 2018 ). Departing from a specific position of individual rights, Morrisey and Walker ( 2018 ) emphasize in their study the imperative to include a social justice perspective, or community rights, on population preventive genomic sequencing to prevent unequal access to precision health. Recently, Jenny Reardon argued how bioethics should prioritize the concept of justice to ensure that society’s moral vision for genomic medicine rests on a collective, inclusive reflection and social responsibility (Reardon 2020 ).…”

Section: Justice Matters: the Dilemma Between The Individual Good And...mentioning

confidence: 99%

The fertility of moral ambiguity in precision medicine

Knox

Svendsen

2023

Med Health Care and Philos

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Although precision medicine cuts across a large spectrum of professions, interdisciplinary and cross-sectorial moral deliberation has yet to be widely enacted, let alone formalized in this field. In a recent research project on precision medicine, we designed a dialogical forum (i.e. ‘the Ethics Laboratory’) giving interdisciplinary and cross-sectorial stakeholders an opportunity to discuss their moral conundrums in concert. We organized and carried out four Ethics Laboratories. In this article, we use Simone de Beauvoir’s concept of moral ambiguity as a lens to frame the participants’ experience with fluid moral boundaries. By framing our approach through this concept we are able to elucidate irremediable moral issues that are collectively underexplored in the practice of precision medicine. Moral ambiguity accentuates an open and free space where different types of perspectives converge and can inform each other. Based on our study, we identified two dilemmas, or thematic interfaces, in the interdisciplinary moral deliberations which unfolded in the Ethics Laboratories: (1) the dilemma between the individual and the collective good; and (2) the dilemma between care and choice. Through our investigation of these dilemmas, we show how Beauvoir’s concept of moral ambiquity not only serves as a fertile catalyst for greater moral awareness but, furthermore, how the concept can become an indispensable part of the practices of and the discourse about precision medicine.

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Section: Justice Matters: the Dilemma Between The Individual Good And...mentioning

confidence: 99%

The fertility of moral ambiguity in precision medicine

Knox

Svendsen

2023

Med Health Care and Philos

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“…In addition, patient trust in this technology and barriers to the use of prenatal ES are important factors that have not been well studied. Factors such as data storage and sharing, equity in access, and viewpoints of diverse individuals, particularly those underrepresented in genomic research, need further attention 10,11 . When ES is conducted in the context of a study, there are additional considerations such as security of the database and further research use of collected data, which expand the scope of considerations beyond ES.…”

Section: Introductionmentioning

confidence: 99%

Trust in prenatal exome sequencing for expectant families facing unexplained fetal anomalies

Rothschild,

Lianoglou,

Sahin Hodoglugil

et al. 2023

Prenatal Diagnosis

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ObjectiveDespite exome sequencing (ES) becoming increasingly incorporated into the prenatal setting, few studies have elucidated motivations for and trust in ES and genomic research among a diverse cohort of patients and their partners.MethodsThis is a qualitative study that involved semi‐structured interviews with pregnant or recently pregnant individuals and their partners, interviewed separately, in the setting of ES performed through research for a fetal structural anomaly. All interview transcripts were coded thematically and developed by a multidisciplinary team.ResultsThirty‐five individuals participated, the majority of whom (66%) self‐identified as a racial or ethnic group underrepresented in genomic research. Many patients and their partners expressed trust in the healthcare system and research process and appreciated the extensive testing for information and closure. There were nonetheless concerns about data privacy and protection for individuals, including those underrepresented, who participated in genomic testing and studies.ConclusionOur findings illustrate important elements of motivation, trust and concern related to prenatal ES performed in the research setting, taking into account the perspectives not only of diverse and underrepresented study participants but also partners of pregnant individuals.

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“…Genomic risk information, based on common genomic susceptibility variants associated with the risk of complex diseases such as cancer, may be incorporated into individual risk assessment [3][4][5][6]. There is an important need to examine the efficacy, cost-effectiveness and ethical considerations prior to offering genomic risk information to the population [1,7,8]. Alongside this, evidence on implementation considerations will be essential to ensure effective and appropriate research translation [1,9,10].…”

Section: Introductionmentioning

confidence: 99%

Implementation considerations for offering personal genomic risk information to the public: a qualitative study

et al. 2020

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Background: Genomic risk information, based on common genomic susceptibility variants associated with risk of complex diseases such as cancer, may be incorporated into personalised prevention and screening strategies. We aimed to engage with members of the public, who are important stakeholders in this process, to further inform program development and other implementation outcomes such as acceptability and appropriateness. Methods: Semi-structured interviews were undertaken with 30 participants (aged 24-69 years, 50% female) recruited from a pilot trial in which they received personalised genomic risk information for melanoma. We explored participants' views and attitudes towards offering general personal genomic risk information to the broader population. The data were analysed thematically. Results: Two overarching themes relevant to implementation considerations were identified. Firstly, participants' preferences for accepting an offer of genomic risk information were based on family history, disease incidence and the possibility of prevention. Secondly, participants felt that the processes for offering risk information should be based on individual preferences, triaged according to risk and be supported by a health professional trained in genomics. Conclusions: Participants felt that offering personal genomic risk information to the general population to inform prevention and early detection recommendations is acceptable, particularly for common, complex conditions such as cancer. Understanding participants' preferences for receiving genomic risk information will assist with communication strategies and health workforce planning. We anticipate that these findings will contribute to the development of implementation strategies for incorporating genomic risk information into routine clinical practice.

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The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice

Cited by 13 publications

References 57 publications

The fertility of moral ambiguity in precision medicine

The fertility of moral ambiguity in precision medicine

Trust in prenatal exome sequencing for expectant families facing unexplained fetal anomalies

Implementation considerations for offering personal genomic risk information to the public: a qualitative study

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