Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine

Lee, Sandra Soo‐Jin

doi:10.1080/15265161.2020.1851813

Cited by 37 publications

(30 citation statements)

References 52 publications

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“…Nevertheless, some people would like to be compensated for their donation if pharmaceutical companies gain a high profit with it [ 98 , 115 ]. The question of whether patients should receive something in return for their donation or “gift” of data and biospecimens is one Lee discussed in a 2020 study [ 20 ]. In this work, Lee referred to anthropologist Marcel Mauss and considered the gift in the context of social relationships, where a gift is inextricable from obligations and reciprocity.…”

Section: Discussionmentioning

confidence: 99%

“…The metaphor of the gift requires something in return, and some authors see the return of individual genetic information as a way to honor the gift in precision medicine research. However, such an approach must take into account that the value of the genetic information (e.g., actionable, non-actionable) is understood by the research participants [ 20 ] and also in their interest. The wish not to know individual genetic information should be respected.…”

Section: Discussionmentioning

confidence: 99%

“…Here, the right to freedom is granted to all human beings [ 18 ] and the recognition of freedom is also the basis of the principle of autonomy in medicine [ 16 ]. In personalized medicine, the patient’s autonomy [ 19 ], justice [ 20 ] and nonmaleficence [ 21 ] provide a common framework for ethical reflection.…”

Section: Introductionmentioning

confidence: 99%

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Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

2021

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Background Precision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review. Methods We used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine. Results Many patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health. Conclusions National legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

2021

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“…Doing so risks limiting reciprocity to a quid pro quo for participation that neglects the wider return of value associated with the gift of biosamples and data-not only to participants but also to the families and communities and not only in the present but also in the future. 33,34 Such future returns can continue to Figure 2 Lollipop plots displaying the odds ratios of being influenced by return of results to donate data across the different countries assessed in this study (United States of America and "partly influenced" categories correspond to the reference groups). The odd ratios are represented by the numbers within the dots with the distance from the baseline (value 1.0) determined by the respective 95% CI.…”

Section: Discussionmentioning

confidence: 90%

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

Milne¹,

Morley²,

Almarri³

et al. 2022

Genetics in Medicine

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The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the "Your DNA, Your Say" online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants' preferences for return of genomic results globally should be considered.

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“…In "Obligations of the 'Gift': Reciprocity and Responsibility in Precision Medicine," Lee (2021) rightly points out that disparities in health care access also lead to disparities in precision medicine research participation. Lee (2021) adds that an emphasis on individual consent among research ethics fails to adequately address Indigenous expectations for the governance of research specimens. As Lee summarizes in their conclusion, it is important to account for the ways that "group history and structural inequities" (64) continue to shape 21st century advances in medicine.…”

mentioning

confidence: 99%

We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision Medicine

Tsosie

Yracheta

Kolopenuk

et al. 2021

The American Journal of Bioethics

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Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine

Cited by 37 publications

References 52 publications

Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision Medicine

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