Platform Biosensing and Post-Genomic Relatedness

Living Data ◽  
2019 ◽  
pp. 93-124
Author(s):  
Celia Roberts ◽  
Adrian Mackenzie ◽  
Maggie Mort ◽  
Theresa Atkinson ◽  
Mette Kragh-Furbo ◽  
...  
Keyword(s):  
Big Data ◽  
Genetic Testing ◽  
Aggregate Data ◽  
Genomic Variation ◽  
The Internet ◽  
Direct To Consumer ◽  
Genetic Risks ◽  
Dna Variations ◽  
Dna Genotyping ◽  
Genomic Relatedness

How does direct-to-consumer genetic testing alter our perceptions of health, reproduction, families and futurity? DNA genotyping is a form of biosensing concerned with genetic risks, susceptibilities and relatedness. This chapter argues that genotyping services such as 23andMe prompt us to take seriously the platform realities of biosensing. DNA genotyping platforms attempt to aggregate data on an unprecedented scale, to anchor the significance of DNA variations for health and kinship, and to connect DNA variations to health practices and health futures. The biosensors commonly used in DNA genotyping are microarrays. Their architecture and the scale of data they produce are prototypes of scientific big data. The internet platforms and products associated with direct-to-consumer DNA genotyping embody a personalizing approach to health and medicine, even though the connections between underpinning scientific findings concerning genomic variation and clinical interventions or treatments are mostly tenuous. At the same time, because the significance of the million or so variations reported in a typical DNA genotype is mostly undefined, the data has led to many attempts to create new connections, to experiment with novel collective forms of analysis and treatment, and to build new relations between biology, medicine and everyday life.

From proband to provider: is there an obligation to inform genetic relatives of actionable risks discovered through direct-to-consumer genetic testing?

2020 ◽  
pp. medethics-2020-106966
Author(s):  
Jordan A Parsons ◽  
Philip E Baker
Keyword(s):  
Genetic Testing ◽  
Ethical Question ◽  
Stepwise Approach ◽  
Direct To Consumer ◽  
Genetic Risks ◽  
The Face ◽  
Risk Of Disease ◽  
Right Not To Know ◽  
Share Information ◽  
Obligation To Inform

Direct-to-consumer genetic testing is a growing phenomenon, fuelled by the notion that knowledge equals control. One ethical question that arises concerns the proband’s duty to share information indicating genetic risks in their relatives. However, such duties are unenforceable and may result in the realisation of anticipated harm to relatives. We argue for a shift in responsibility from proband to provider, placing a duty on test providers in the event of identified actionable risks to relatives. Starting from Parker and Lucassen’s (2004) 'joint account model', we adapt Kilbride’s (2018) application of the rule of rescue and balance it against the relative’s right not to know, placing responsibility on the providers of direct-to-consumer genetic testing. Where the risk of disease to a relative is actionable, we argue providers ought to share results even in the face of the proband’s objections. Confidentiality issues are navigated by a pre-emptive consent model, whereby consumers agree to the sharing of certain information with their relatives ahead of testing and as a condition of testing. When a relative is informed, the proband’s privacy is protected by maximal deidentification, and the rights of the relative are met by a stepwise approach to informing that allows them to decide how much information they receive.

Direct-to-consumer Genetic Testing: Changes in the eu Regulatory Landscape

2015 ◽  
Vol 22 (5) ◽  
pp. 463-480 ◽  
Author(s):  
Santa Slokenberga
Keyword(s):  
Genetic Testing ◽  
Transition State ◽  
The Internet ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Performance Requirements ◽  
Major Shift ◽  
Regulatory Landscape ◽  
The Eu

Rapid advances in genomics and technology have rendered genetic testing services easily accessible to consumers over the Internet in the form of direct-to-consumer genetic testing. In the eu, the ivd Directive has been animadverted for its inability to tackle the challenges direct-to-consumer genetic testing has posed. Currently, the eu legislation is in a transition state. It is thus, timely to assess, to what extent the proposed ivd Regulation is intended to address the performance requirements and utility of direct-to-consumer genetic tests, which are made available to consumers within the eu over the Internet, and discuss the developments vis-à-vis the ivd Directive. To compare with the ivd Directive, the ivd Regulation presents a major shift in how direct-to-consumer genetic testing is treated in the eu. It remains unclear, whether and how the eu requirements can be applied beyond the eu market.

scholarly journals Co-constructing ancestry through direct-to-consumer genetic testing

2021 ◽  
Vol 30 (2) ◽  
pp. 30-35
Author(s):  
Alexander Lang ◽  
Florian Winkler
Keyword(s):  
Genetic Testing ◽  
Social Impact ◽  
Qualitative Interviews ◽  
Relevant Literature ◽  
Genetic Ancestry ◽  
The Internet ◽  
Recreational Activity ◽  
Direct To Consumer ◽  
Website Analysis

Direct-to-consumer (DTC) genetic ancestry tests offered via the internet supposedly uncover the ancestry of those tested. While these tests might be seen as a means to find a biologically inscribed and fixed genealogy, this paper explores how companies and customers co-construct ancestry through genetic ancestry testing. The study draws on a review of relevant literature, qualitative interviews with experts and stakeholders, a website analysis, and an autoethnographic self-observation. It shows how DTC genetic testing companies create specific concepts of ancestry in their marketing, development of specific databases, and presentation of results, but also how users interpret and incorporate their results into their own genealogies and lives. Looking at the potential social impact of DTC ancestry testing, the paper questions its categorization as recreational activity or entertainment.

Buying your Self on the Internet

2019 ◽  
Author(s):  
Andelka M. Phillips
Keyword(s):  
Genetic Testing ◽  
Health Conditions ◽  
The Internet ◽  
Personal Genomics ◽  
Peace Of Mind ◽  
Direct To Consumer ◽  
The World ◽  
Different Types ◽  
Consumer Services ◽  
Specific Regulation

The personal genomics industry (aka direct-to-consumer genetic testing) has created a market for genetic tests as consumer services. This has taken genetic testing out of the clinic and into people’s homes. The industry is diverse offering tests for various health conditions and ancestry, as well as more dubious tests, such as ‘peace of mind’ paternity, ‘infidelity’ (or surreptitious testing), child talent, and even matchmaking. It is growing rapidly, but at present many tests are not standardized and the industry has not been subject to specific regulation. As with many other Internet based industries, companies tend to rely on their electronic wrap contracts to govern their relationships with their consumers. This book provides an introduction to the world of personal genomics and examines the rise of the industry and its use of ‘wrap’ contracts, drawing upon the author’s review of the contracts of 71 companies that provide tests for health purposes. It explores the different types of tests available and the issues that this industry raises for law and for society.

Experiences of individuals receiving “Not Parent Expected” (NPE) results through direct-to-consumer genetic testing

2021 ◽  
Vol 132 ◽  
pp. S289
Author(s):  
Julia Becker ◽  
Janey Youngblom ◽  
Brianne Kirkpatrick ◽  
Liane Abrams
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer

scholarly journals An exploratory assessment of the applicability of direct-to-consumer genetic testing to translational research in Japan

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Masahiro Inoue ◽  
Shota Arichi ◽  
Tsuyoshi Hachiya ◽  
Anna Ohtera ◽  
Seok-Won Kim ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Translational Research ◽  
Drug Target ◽  
Target Genes ◽  
Healthy Individuals ◽  
Alcohol Sensitivity ◽  
Direct To Consumer ◽  
Disease States ◽  
Multiple Phenotypes ◽  
Related Phenotype

Abstract Objective In order to assess the applicability of a direct-to-consumer (DTC) genetic testing to translational research for obtaining new knowledge on relationships between drug target genes and diseases, we examined possibility of these data by associating SNPs and disease related phenotype information collected from healthy individuals. Results A total of 12,598 saliva samples were collected from the customers of commercial service for SNPs analysis and web survey were conducted to collect phenotype information. The collected dataset revealed similarity to the Japanese data but distinguished differences to other populations of all dataset of the 1000 Genomes Project. After confirmation of a well-known relationship between ALDH2 and alcohol-sensitivity, Phenome-Wide Association Study (PheWAS) was performed to find association between pre-selected drug target genes and all the phenotypes. Association was found between GRIN2B and multiple phenotypes related to depression, which is considered reliable based on previous reports on the biological function of GRIN2B protein and its relationship with depression. These results suggest possibility of using SNPs and phenotype information collected from healthy individuals as a translational research tool for drug discovery to find relationship between a gene and a disease if it is possible to extract individuals in pre-disease states by properly designed questionnaire.

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