Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future

Callier, Shawneequa L.; Abudu, Rachel; Mehlman, Maxwell J.; Singer, Mendel E.; Neuhauser, Duncan; Caga-Anan, Charlisse; Wiesner, Georgia L.

doi:10.1111/bioe.12285

Cited by 36 publications

(26 citation statements)

References 3 publications

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“…This integrative approach can already be spotted in the literature. Ethical, legal and social implications (ELSI) focus on topics of consent, disclosure, data sharing, privacy and confidentiality at a population level [ 34 ]. However, as a complement, in its 2015 report, the Nuffield Council on Bioethics recommended the usage of four essential principles - respect for the person, respect for established human rights, participation of those with morally relevant interests, and accounting for decisions – that integrate bottom-up ethical considerations to biological and health data [ 35 ].…”

Section: Discussionmentioning

confidence: 99%

Patient data and patient rights: Swiss healthcare stakeholders’ ethical awareness regarding large patient data sets – a qualitative study

2018

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BackgroundThere is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient’s rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy makers.MethodsWe used a qualitative design to examine Swiss healthcare stakeholders’ experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory.ResultsAll interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries’ patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients’ rights and citizens’ involvement on the other.ConclusionsThe advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data.Electronic supplementary materialThe online version of this article (10.1186/s12910-018-0261-x) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Patient data and patient rights: Swiss healthcare stakeholders’ ethical awareness regarding large patient data sets – a qualitative study

2018

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“…1 However, an unbiased bioethical perspective would challenge many of these perceptions and biomedical intentions, such as preventing persons with genetic conditions from passing on genetic disabilities to generations based on justice and an individual's right to autonomy. 7,8 A similar challenge would be offered to the termination of pregnancy because of foetal anomaly, or the diverting of limited healthcare resources towards research to find solutions for rare disabling conditions, or in providing the means for assisted suicide to persons considered to have disabling conditions. 1 When such decisions are made to terminate a pregnancy due to foetal abnormality or withdrawing lifesustaining treatment or 'normalizing' surgery is done for disabled persons, the decision-makers are in fact making a judgement regarding the quality of life for persons with disability.…”

Section: Bioethical Perspectivesmentioning

confidence: 99%

The disability-rights perspective within the bioethics agenda

Aarons¹

2020

Nurs Ethics

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The life perspectives of persons with disabilities have been neglected in many countries and particularly in lower- and middle-income countries that have fewer resources to adequately address the societal needs of these persons. Bioethics purports normative standards for the way in which we treat with others, and the virtue of care should be at the heart of everyday life. Human rights are norms that aspire to protect all persons everywhere. Within this milieu, persons with disabilities who make up a significant portion of all societies worldwide meet many social barriers that inhibit their quality of life and leave them greatly disadvantaged in comparison to able-bodied persons. This article focuses on the notion of quality of life, the presumed perspectives of biomedicine and bioethics on disability, the neglect of the lived experience of persons with disabilities, and the discrimination underlying the struggle for equal rights and opportunities for persons with disability. It argues for equal access to social and beneficial medical interventions for persons with disabilities; that persons with disabilities should be seen as different but equal; that their contributions to societal deliberations would enhance the richness of thought, views, narratives and perspectives; and that society should stop using the term disability and use instead the less value-laden term anomaly. Finally, it recommends educational campaigns to change negative attitudes towards persons with predicaments or anomalies, the respecting of human diversity, collaboration between upper-income and lower- and middle-income countries to develop strategies that seek to change negative attitudes towards persons with anomalies, and the inclusion worldwide of all these matters as a part of a bioethics agenda that advocates for respecting the human rights of persons with anomalies.

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“…Genomic research and rapidly evolving related technologies, such as next-generation sequencing and genome editing, raise important questions relating to their ethical, legal and social dimensions 1 . In the context of African genomics research, community engagement has emerged as a powerful means to enhance genomic education of the public, anticipate ethical challenges, and also in helping to develop ways of addressing these 2 .…”

Section: Introductionmentioning

confidence: 99%

Using the Drama of DNA approach to community engagement in genomic research in South Africa: experiences and lessons learnt

2020

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In the context of African genomics research, community engagement has emerged as a powerful means to enhance genomic education of the public and anticipate ethical challenges in relation to increasing genomic research on the African continent. We report our experiences of using narrative genomics, a drama-based community engagement method, to engage scientific and lay communities about ethical and social challenges related to the return of individual genetic research results in genomic research. The method uses set scripts, which audience members act out and thereafter engage in a series of ethical dilemmas presented in the script. In this paper, we describe the steps we took to change the original scripts to make them more suitable for a South African audience. We found the method to be relatively effective at engaging audiences in South Africa. While the changes in the South African versions appear minor, through our experience in trying to change the scripts to make them relatable to a South African audience, we observed that were limits to how much of the script we could change if the narrative was still to be effective as a community engagement method. While this method and the original scripts are incredibly helpful, new scripts must be developed for African audiences, and these could potentially be more impactful as a community engagement tool in different local contexts.

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Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future

Abstract: Considering that strategies in personalized medicine increasingly target individuals' unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community.

Cited by 36 publications

References 3 publications

Patient data and patient rights: Swiss healthcare stakeholders’ ethical awareness regarding large patient data sets – a qualitative study

Patient data and patient rights: Swiss healthcare stakeholders’ ethical awareness regarding large patient data sets – a qualitative study

The disability-rights perspective within the bioethics agenda

Using the Drama of DNA approach to community engagement in genomic research in South Africa: experiences and lessons learnt

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