Policy Uncertainty, Sequencing, and Cell Lines

Caulfield, Timothy; McGuire, Amy L.

doi:10.1534/g3.113.007435

Cited by 8 publications

(7 citation statements)

References 18 publications

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“…Scientific progress, patient control, and accountability were discussed to a lesser degree, and privacy, public education, and advocacy even less so. Discussion in professional literature comprised a similar array of themes, including marked emphasis on informed consent ( 20 , 22 , 33 , 37 , 49 , 79 , 123 , 135 , 147 ), as well as commercialization and compensation ( 123 , 141 ); privacy and confidentiality ( 20 , 33 , 49 ); race, poverty, and health disparities ( 42 , 123 ); familial implications of genetic information ( 14 , 22 , 64 , 96 , 135 ); ownership of biospecimens ( 22 , 123 ); and trust in biomedical research ( 135 ).…”

Section: Reflections On the Story Of Henrietta Lacksmentioning

confidence: 99%

Lessons from HeLa Cells: The Ethics and Policy of Biospecimens

Beskow

2016

Annu. Rev. Genom. Hum. Genet.

100

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Human biospecimens have played a crucial role in scientific and medical advances. Although the ethical and policy issues associated with biospecimen research have long been the subject of scholarly debate, the story of attention of a much broader audience. The story has been a catalyst for policy change, including major regulatory changes proposed in the United States surrounding informed consent. These proposals are premised in part on public opinion data, necessitating a closer look at what such data tell us. The development of biospecimen policy should be informed by many considerations—one of which is public input, robustly gathered, on acceptable approaches that optimize shared interests, including access for all to the benefits of research. There is a need for consent approaches that are guided by realistic aspirations and a balanced view of autonomy within an expanded ethical framework.

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Section: Reflections On the Story Of Henrietta Lacksmentioning

confidence: 99%

Lessons from HeLa Cells: The Ethics and Policy of Biospecimens

Beskow

2016

Annu. Rev. Genom. Hum. Genet.

100

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“…In fact, there remains a great deal of uncertainty regarding, inter alia, the ownership of samples [12–14] and what type of consent is legally appropriate. A recent review of Canadian law by a team at McGill University, for example, concluded that while broad consent is ubiquitous, it “does not seem to fulfill legal and ethical informational requirements” [15].…”

Section: Introductionmentioning

confidence: 99%

“…One would expect that with so much activity and such broad-based investment, the law relevant to biobanking would be relatively settled, especially for something as fundamental to the research ethics process. In fact, there remains a great deal of uncertainty regarding, inter alia, the ownership of samples [ 12 – 14 ] and what type of consent is legally appropriate. A recent review of Canadian law by a team at McGill University, for example, concluded that while broad consent is ubiquitous, it “does not seem to fulfill legal and ethical informational requirements” [ 15 ].…”

Section: Introductionmentioning

confidence: 99%

Genes, cells, and biobanks: Yes, there’s still a consent problem

Caulfield

Murdoch

2017

PLoS Biol

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From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends—including concerns about commercialization and perceived rights of continuing control (“biorights”)—seem likely to intensify these issues.

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“…As well, while international literature indicates that aggressive drug law enforcement practices increase vulnerability to HIV infection and other harms among IDU [4,19-21], these studies have tended to focus on the aggregate impact of police crackdowns of relatively short duration, and the impact of specific forms of police misconduct has seldom been quantified. Moreover, most of the previous academic research in this field has been conducted in Western countries, not in Southeast Asia where the legal and social environments surrounding illicit drug use are distinct from those in Western settings [22]. Therefore, we sought to identify the prevalence and correlates of experiencing police beating among a community-recruited sample of IDU in Bangkok, Thailand.…”

Section: Introductionmentioning

confidence: 99%

Reports of police beating and associated harms among people who inject drugs in Bangkok, Thailand: a serial cross-sectional study

Hayashi

Csete

et al. 2013

BMC Public Health

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BackgroundThailand has for years attempted to address illicit drug use through aggressive drug law enforcement. Despite accounts of widespread violence by police against people who inject drugs (IDU), the impact of police violence has not been well investigated. In the wake of an intensified police crackdown in 2011, we sought to identify the prevalence and correlates of experiencing police beating among IDU in Bangkok.MethodsCommunity-recruited samples of IDU in Bangkok were surveyed between June 2009 and October 2011. Multivariate log-binomial regression was used to identify factors associated with reporting police beating.ResultsIn total, 639 unique IDU participated in this serial cross-sectional study, with 240 (37.6%) participants reporting that they had been beaten by police. In multivariate analyses, reports of police beating were associated with male gender (Adjusted Prevalence Ratio [APR] = 4.43), younger age (APR = 1.69), reporting barriers to accessing healthcare (APR = 1.23), and a history of incarceration (APR = 2.51), compulsory drug detention (APR = 1.22) and syringe sharing (APR = 1.44), and study enrolment in 2011 (APR = 1.27) (all p < 0.05). Participants most commonly reported police beating during the interrogation process.ConclusionsA high proportion of IDU in Bangkok reported having been beaten by the police. Experiencing police beating was independently associated with various indicators of drug-related harm. These findings suggest that the over-reliance on enforcement-based approaches is contributing to police-perpetrated abuses and the perpetuation of the HIV risk behaviour among Thai IDU.

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Policy Uncertainty, Sequencing, and Cell Lines

Cited by 8 publications

References 18 publications

Lessons from HeLa Cells: The Ethics and Policy of Biospecimens

Lessons from HeLa Cells: The Ethics and Policy of Biospecimens

Genes, cells, and biobanks: Yes, there’s still a consent problem

Reports of police beating and associated harms among people who inject drugs in Bangkok, Thailand: a serial cross-sectional study

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