Research Ethics in the Era of Personalized Medicine: Updating Science’s Contract with Society

Meslin, Eric M.; Cho, Mildred K.

doi:10.1159/000319473

Cited by 33 publications

(28 citation statements)

References 55 publications

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“…For example, the deliberants indicated that biobanks should be used for the common good and that this should prevail over the research interests of the initiators and users of the biobank. Meslin and Cho [52] present a similar position in arguing for a new social contract between genetic researchers and the public. Collectively, the similarities undoubtedly heightened the extent to which the deliberants’ recommendations became evident in the policy.…”

Section: Discussionmentioning

confidence: 99%

An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking

Molster

Maxwell

Youngs

et al. 2011

Public Health Genomics

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Background: Deliberative public engagement is recommended for policy development in contested ethical areas. Scholars provide little guidance on how deliberative outputs can be translated to policy. This paper describes the processes we undertook to design a deliberative public forum for citizens to develop recommendations on biobanking that were adopted as health policy. Method: The 4-day forum, held in 2008 in Perth, Western Australia, was designed in collaboration with academic experts. Deliberant recommendations were recorded in a formal report presented to policy-makers. Deliberations were audio-taped and transcribed. Translation involved transcript analyses, comparison of recommendations to other stakeholder views and post-forum consultations. Results: Sixteen citizens made recommendations on ethical, legal and social issues related to biobanking. Most recommendations were translated into biobanking guidelines, with which Western Australia government health agencies must comply. The value of deliberative public participation in policy-making was most evident when trade-offs in competing interests, hopes and concerns were required. Translation issues included the impact of a small number of participants with limited socio-demographic diversity on procedural and policy legitimacy. Conclusions: Assessing the sufficiency of diversity in citizen representation was central to the deliberation-to-translation process. Institutional context facilitated the uptake of deliberation and translation processes. The use of these processes influenced policy substance and credibility among stakeholders and contributed to the state government directive that policy compliance be mandatory. We urge others to publish deliberation-to-translation processes so that best-practices may be identified.

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Section: Discussionmentioning

confidence: 99%

An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking

Molster

Maxwell

Youngs

et al. 2011

Public Health Genomics

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“…In short, low levels of funding have adverse consequences for society in general as biomedical or genomic research yields prosperity and other economic benefits by creating jobs and valuable products and methods [3,27]. …”

Section: Research Ethics 20: New Perspectives On Norms Values and mentioning

confidence: 99%

“…The scientific process is embedded in a complex network with different stakeholders, which need to be more systematically addressed. Meslin and Cho [3] analysed the existing “common set of ethical principles” in research ethics and proposed a reframing of the “social contract” between science and society, highlighting the need to put focus on the broader context of research. With this paper, we will extend the existing body of knowledge assessing the development or evolution of research ethics by highlighting the current challenges to scientific integrity.…”

Section: Introductionmentioning

confidence: 99%

Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources

Brall

Maeckelberghe

Porz

et al. 2017

Public Health Genomics

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Research ethics anew gained importance due to the changing scientific landscape and increasing demands and competition in the academic field. These changes are further exaggerated because of scarce(r) resources in some countries on the one hand and advances in genomics on the other. In this paper, we will highlight the current challenges thereof to scientific integrity. To mark key developments in research ethics, we will distinguish between what we call research ethics 1.0 and research ethics 2.0. Whereas research ethics 1.0 focuses on individual integrity and informed consent, research ethics 2.0 entails social scientific integrity within a broader perspective of a research network. This research network can be regarded as a network of responsibilities in which every stakeholder involved has to jointly meet the ethical challenges posed to research.

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“…5,6 It is widely recognized that physicians entering medical practice in the 21st century will require more than a basic understanding of human genetics.…”

Section: Importance Of Genetic and Genomic Fluency For The Practicingmentioning

confidence: 99%

“…[1][2][3][4] Concomitant with the advancement of genetic knowledge and technologies is the emergence of ethical and public policy concerns related to their application to medical practice. 5,6 It is widely recognized that physicians entering medical practice in the 21st century will require more than a basic understanding of human genetics.…”

Section: Importance Of Genetic and Genomic Fluency For The Practicingmentioning

confidence: 99%

Enhancing exposure to genetics and genomics through an innovative medical school curriculum

Dhar

Alford

Nelson

et al. 2012

Genetics in Medicine

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education reportPurpose: Physicians entering medical practice in the 21st century will require more than a basic understanding of human genetics because of rapid progress in the field of genetics and genomics. The current undergraduate medical curriculum at most institutions is not adequate to prepare medical students for these challenges. Enhancing exposure to genetics throughout the medical school curriculum should help prepare the next generation of physicians to use genetic and genomic information for optimal patient care. methods:We have introduced a Genetics Track Curriculum to the undergraduate medical curriculum at Baylor College of Medicine.Results: This track runs in parallel to the existing 4-year curriculum and includes didactic sessions, small group discussions, longitudinal clinical experiences, clinical and laboratory rotations, community outreach, and scholarly projects related to genetics. It also provides the students a means to network and discuss topics and career paths in medical genetics. conclusion:We have developed a novel curriculum that enhances genomic education for medical students with the ultimate goal of enabling our graduates to deliver more effective and personalized medical care. We believe that the Genetics Track Curriculum at Baylor College of Medicine can serve as a prototype for other medical schools across the country and abroad. Genet Med imPORtAnce OF Genetic And GenOmic FLUencY FOR tHe PRActicinG PHYsiciAnOver the past several decades, there have been countless discoveries in medical genetics and molecular biology. There has also been rapid progress in biotechnology. These advances have practical applications for the determination of disease risk, the interpretation of clinical laboratory data, the treatment of disease, the use of pharmacologic agents, and reproductive counseling.1-4 Concomitant with the advancement of genetic knowledge and technologies is the emergence of ethical and public policy concerns related to their application to medical practice. 5,6 It is widely recognized that physicians entering medical practice in the 21st century will require more than a basic understanding of human genetics.Historically, genetic testing has been used selectively to diagnose monogenic or chromosomal disorders or to evaluate the risk of developing or transmitting single-gene disorders. However, genetic testing is increasingly being used to modify therapeutics, to determine prognosis, and even to provide probabilistic risk assessment for common/complex disorders. Because of advances in technology and the availability of highthroughput sequencing and high-density microarrays, it is now possible to interrogate thousands of loci in an individual's genome at a relatively low cost and in a timely manner. 4,[6][7][8][9] In the future, practicing physicians will need to appraise these technologies and make critical judgments and decisions regarding the results they generate for their patients. Several studies have shown that most physicians are unable to interpret even simple gene...

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Research Ethics in the Era of Personalized Medicine: Updating Science’s Contract with Society

Cited by 33 publications

References 55 publications

An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking

An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking

Research Ethics 2.0: New Perspectives on Norms, Values, and Integrity in Genomic Research in Times of Even Scarcer Resources

Enhancing exposure to genetics and genomics through an innovative medical school curriculum

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