Genetic technologies, health care policy and the patent bargain

Ta, Caulfield; Bm, Knoppers; Gold, E. Richard; Sheremeta, LE; Bridge, PJ

doi:10.1034/j.1399-0004.2003.630103.x

Cited by 19 publications

(7 citation statements)

References 17 publications

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“…Much discussion has centered around the effect of exclusive licensing of genetic testing for familial cancer syndromes such as BRCA1 and BRCA2 and the impact of the associated high testing charges on healthcare systems (8,9 ). Little attention has been focused on the same issue as it relates to neurogenetic testing, however.…”

Section: Discussionmentioning

confidence: 99%

Utilization and Diagnostic Yield of Neurogenetic Testing at a Tertiary Care Facility

Edlefsen¹,

Tait

Wener

et al. 2007

Clinical Chemistry

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Section: Discussionmentioning

confidence: 99%

Utilization and Diagnostic Yield of Neurogenetic Testing at a Tertiary Care Facility

Edlefsen¹,

Tait

Wener

et al. 2007

Clinical Chemistry

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“…What is "transparent" about broad consent is the lack of specificity and participants' lack of choice over the future use of their biologic contributions (Scott et al 2012)-not the kind of transparency participants in this study were looking for. Beyond this sample, members of the public, in general, have been requesting a more "informed" consent process for genomics research and are expressing opposition to the patenting and commercialization of genetic discoveries that may decrease access to genetic services (Caulfield et al 2003;Haddow et al 2007). …”

Section: Discussionmentioning

confidence: 99%

Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

et al. 2013

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There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans' perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a "seat at the table." They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.

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“…However, the organisation of sharing is often not precisely documented. Intellectual property issues bring about resistance, ambiguity, a lack of definition of responsibilities and, most importantly, practical difficulties for researchers [57][58][59]. As mentioned by the National French Bioethics Advisory Committee regarding the relationship between researchers and biobanks: ''The appearance on the scene of an intermediary, the ''bank'', tends to spotlight issues which in fact are not new.…”

Section: Secondary Usesmentioning

confidence: 99%

Trends in ethical and legal frameworks for the use of human biobanks

Cambon‐Thomsen¹,

Rial‐Sebbag²,

Knoppers³

2007

Eur Respir J

241

204

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Numerous studies of genetic epidemiology and post-genomics in respiratory diseases rely on the use of biobanks, defined as organised biological sample collections with associated personal and clinical data. The use of biobanks is increasing and raises several ethical issues. What are the ethical trends and legal frameworks in the post-genomic era? Are there new issues in relation to the developments of techniques and new study designs? How does this affect the clinician's attitudes and relationship with the patients?The main ethical issues encountered are: informed consent; confidentiality; secondary use of samples and data over time; return of results; and data sharing. Different levels and modalities of dealing with such issues are identified and vary from legally binding measures to ''soft'' regulations, such as ethical recommendations by various committees or professional organisations.A further level of complexity appears with the increasing international dimension of such activities in a context in which national positions vary on those topics. There is a tension between a necessary level of diversity in ethical positions and an indispensable common pedestal of principles and procedures to manage these issues in order to foster research.Current legal and ethical trends favour the facilitation of secondary use of samples, more biobank openness, balanced with a growing attention to dialogue and public/stakeholder consultation, an increased role for research ethics committees and more sophisticated data protection and governance structures.

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Genetic technologies, health care policy and the patent bargain

Cited by 19 publications

References 17 publications

Utilization and Diagnostic Yield of Neurogenetic Testing at a Tertiary Care Facility

Utilization and Diagnostic Yield of Neurogenetic Testing at a Tertiary Care Facility

Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

Trends in ethical and legal frameworks for the use of human biobanks

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