Indigenous blood and ethical regimes in the United States and Australia since the 1960s

Radin, Joanna; Kowal, Emma

doi:10.1111/amet.12168

Cited by 40 publications

(11 citation statements)

References 68 publications

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“…Their comparison of US and Australian cases highlights the effort put into aligning social and technical orders in these regimes; the use of collections of biological material reflects 'variable and mutating' understandings of citizenship, scientific authority and politics. 18 Forensic DNA databases Forensics generally describes the use of scientific methods and technologies for purposes of security and criminal justice, including the investigation of crime. 19 Since the mid-1990s, centrally governed forensic DNA databases have been established around the world.…”

Section: Biovaluementioning

confidence: 99%

Was this an ending? The destruction of samples and deletion of records from the UK Police National DNA Database

Skinner¹,

Wienroth²

2019

BJHS Themes

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Between December 2012 and September 2013 the United Kingdom government oversaw one of the largest destructions of a collection of human-derived samples ever conducted. Approximately 7,753,000 DNA samples and 1,766,000 DNA computerized profiles associated with the UK's policing National DNA Database (NDNAD) were destroyed or deleted. This paper considers this moment of exceptional erasure and the consequent implementation of new processes for routinely discarding and keeping samples and their associated computer records. It is divided into two parts. The first discusses the rapid growth of the NDNAD; the changing legal, ethical and political landscape within which it was promoted and contested; and the developments that led to the decision to limit its scope. The second shifts focus to the operational challenge of implementing the destruction of samples and deletion of records. The NDNAD case allows us to examine the labour and continuing uncertainties involved in erasure of biological data and the emerging norms and practices associated with collecting DNA in differing formats. It also sheds new light on the importance, interconnection and ongoing instability of the ethical and practical biovalue of genetic collections: as the paper argues, far from ending the NDNAD, a more rigorous regime of erasure has helped, for the moment at least, to secure its future.

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Section: Biovaluementioning

confidence: 99%

Was this an ending? The destruction of samples and deletion of records from the UK Police National DNA Database

Skinner¹,

Wienroth²

2019

BJHS Themes

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“…See also Cavalli-Sforza et al(1969, p. 255). The pygmies that Cavalli-Sforza studied lived in the Central African Republic and were therefore also referred to as ''Western pygmies''.16 On the chromosome studies of ''vanishing populations'' supported by the WHO and the IBP, see de Chadarevian (2015b); on the blood collection program of indigenous people more generally and the ethical issues involved in the collection, preservation and re-use of the samples, seeRadin (2013Radin ( , 2014Radin ( , 2017;Kowal and Radin (2015) andRadin and Kowal (2015).…”

mentioning

confidence: 99%

Whose Turn? Chromosome Research and the Study of the Human Genome

Chadarevian

2017

J Hist Biol

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A common account sees the human genome sequencing project of the 1990s as a "natural outgrowth" of the deciphering of the double helical structure of DNA in the 1950s. The essay aims to complicate this neat narrative by putting the spotlight on the field of human chromosome research that flourished at the same time as molecular biology. It suggests that we need to consider both endeavors - the human cytogeneticists who collected samples and looked down the microscope and the molecular biologists who probed the molecular mechanisms of gene function - to understand the rise of the human genome sequencing project and the current genomic practices. In particular, it proposes that what has often been described as the "molecularization" of cytogenetics could equally well be viewed as the turn of molecular biologists to human and medical genetics - a field long occupied by cytogeneticists. These considerations also have implications for the archives that are constructed for future historians and policy makers.

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“…Pellekaan, Kowal and Garrison have written about this extensively. 48 Kowal has described the 'orphaned' genetic samples that are held in institutional freezers "unable to be mobilized without a degree of emotional and bureaucratic labour". 49 It is possible that effective mechanisms to communicate and educate, to support decision making and to enable free, prior and informed consent to be clearly signaled and withdrawn, may enable future research on these historical samples to take place.…”

Section: Donorsmentioning

confidence: 99%

Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making

Prictor¹,

Huebner²,

Teare³

et al. 2020

J. Law. Med. Ethics

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Dynamic Consent (DC) is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people (First Peoples of Australia). In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining (or redefining) DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation.

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Indigenous blood and ethical regimes in the United States and Australia since the 1960s

Cited by 40 publications

References 68 publications

Was this an ending? The destruction of samples and deletion of records from the UK Police National DNA Database

Was this an ending? The destruction of samples and deletion of records from the UK Police National DNA Database

Whose Turn? Chromosome Research and the Study of the Human Genome

Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making

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