scholarly journals Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0260340
Author(s):  
James W. Hazel ◽  
Catherine Hammack-Aviran ◽  
Kathleen M. Brelsford ◽  
Bradley A. Malin ◽  
Laura M. Beskow ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Law Enforcement ◽  
Third Parties ◽  
Policy And Practice ◽  
Genetic Tests ◽  
Secondary Use ◽  
Direct To Consumer ◽  
Potential Value ◽  
Risks And Benefits ◽  
And Control

Direct-to-consumer genetic testing is marketed as a tool to uncover ancestry and kin. Recent studies of actual and potential users have demonstrated that individuals’ responses to the use of these tests for these purposes are complex, with privacy, disruptive consequences, potential for misuse, and secondary use by law enforcement cited as potential concerns. We conducted six focus groups with a diverse sample of participants (n = 62) who were aware of but had not used direct-to-consumer genetic tests, in an effort to understand more about what people considering these tests think about the potential value, risks, and benefits of such testing, taking into account use by third parties, such as potential kin and law enforcement. Participants differed widely in the perceived value of direct-to-consumer genetic tests for ancestry and kinship information for their own lives, including the desirability of contact with previously unknown relatives. Some perceived ancestry testing as mere curiosity or entertainment, while others, particularly those who had gaps in their family history, few living relatives, or who were adopted, saw greater value. Concerns about intrusion into one’s life by purported kin and control of data were widespread, with many participants expressing concern about secondary uses of data that could harm users or their families. The use of direct-to-consumer genetic tests data for forensic genealogy elicited a particularly wide array of reactions, both spontaneously and in response to specific discussion prompts, mirroring the current public debate about law enforcement access to such data. The themes uncovered through our investigation warrant specific attention in the continued development of the science, policy, and practice of commercial direct-to-consumer genetic testing.

scholarly journals Secondary Data Usage in Direct-to-Consumer Genetic Testing: To What Extent Are Customers Aware and Concerned?

2021 ◽  
pp. 1-8
Author(s):  
Janessa Mladucky ◽  
Bonnie Baty ◽  
Jeffrey Botkin ◽  
Rebecca Anderson
Keyword(s):  
Genetic Testing ◽  
Secondary Data ◽  
Structured Interviews ◽  
Customer Data ◽  
Secondary Use ◽  
Data Usage ◽  
Direct To Consumer ◽  
New Information ◽  
Opt Out ◽  
Potential Risks

Introduction: Customer data from direct-to-consumer genetic testing (DTC GT) are often used for secondary purposes beyond providing the customer with test results. Objective: The goals of this study were to determine customer knowledge of secondary uses of data, to understand their perception of risks associated with these uses, and to determine the extent of customer concerns about privacy. Methods: Twenty DTC GT customers were interviewed about their experiences. The semi-structured interviews were transcribed, coded, and analyzed for common themes. Results: Most participants were aware of some secondary uses of data. All participants felt that data usage for research was acceptable, but acceptability for non-research purposes varied across participants. The majority of participants were aware of the existence of a privacy policy, but few read the majority of the privacy statement. When previously unconsidered uses of data were discussed, some participants expressed concern over privacy protections for their data. Conclusion: When exposed to new information on secondary uses of data, customers express concerns and a desire to improve consent with transparency, more opt-out options, improved readability, and more information on future uses and potential risks from direct-to-consumer companies. Effective ways to improve readership about the secondary use, risk of use, and protection of customer data should be investigated and the findings implemented by DTC companies to protect public trust in these practices.

Direct-to-Consumer Genetic Testing

2012 ◽  
Vol 5 (1) ◽  
pp. 35-67 ◽  
Author(s):  
Richard A. Stein
Keyword(s):  
Health Care ◽  
Genetic Testing ◽  
Health Care Providers ◽  
Double Helix ◽  
Health Care Facilities ◽  
Past Century ◽  
Care Providers ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Dna Double Helix

Genetics has fascinated societies since ancient times, and references to traits or behaviors that appear to be shared or different among related individuals have permeated legends, literature, and popular culture. Biomedical advances from the past century, and particularly the discovery of the DNA double helix, the increasing numbers of links that were established between mutations and medical conditions or phenotypes, and technological advances that facilitated the sequencing of the human genome, catalyzed the development of genetic testing. Genetic tests were initially performed in health care facilities, interpreted by health care providers, and included the availability of counseling. Recent years have seen an increased availability of genetic tests that are offered by companies directly to consumers, a phenomenon that became known as direct-to-consumer genetic testing. Tests offered in this setting range from the ones that are also provided in health care establishments to tests known as ‘recreational genomics,’ and consumers directly receive the test results. In addition, testing in this context often does not involve the availability of counseling and, when this is provided, it frequently occurs on-line or over the phone. As a field situated at the interface between biotechnology, biomedical research, and social sciences, direct-to-consumer genetic testing opens multiple challenges that can be appropriately addressed only by developing a complex, inter-disciplinary framework.

scholarly journals ‘It’s much more grey than black and white’: clinical geneticists’ views on the oversight of consumer genomics in Europe

2020 ◽  
Vol 17 (2) ◽  
pp. 129-140
Author(s):  
Louiza Kalokairinou ◽  
Pascal Borry ◽  
Heidi C Howard
Keyword(s):  
Iterative Process ◽  
Healthcare Professionals ◽  
Quality Standards ◽  
Healthcare Setting ◽  
European Countries ◽  
Structured Interviews ◽  
Genetic Tests ◽  
Black And White ◽  
Direct To Consumer ◽  
Risks And Benefits

Aim: Direct-to-consumer (DTC) genetic tests (GT) have created controversy regarding their risks and benefits. In view of recent regulatory developments, this article aims to explore the attitudes of European clinical geneticists toward the oversight of DTC GT. Materials & methods: Fifteen semi-structured interviews were performed with clinical geneticists based in ten European countries. The transcripts were thematically analysized in an iterative process. Results & conclusion: Respondents strongly supported quality standards for DTC GT equal to those applied within the healthcare setting. Despite participants unanimously considering the involvement of healthcare professionals to be important, mandatory medical supervision was controversial. In this regard, promoting education and truth-in-advertising was considered as being key in maintaining a balance between protecting consumers and promoting their autonomy.

Risks and Benefits of Direct-to-Consumer Genetic Testing Remain Unclear

JAMA ◽  
2008 ◽  
Vol 300 (13) ◽  
pp. 1503 ◽  
Author(s):  
Bridget M. Kuehn
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer ◽  
Risks And Benefits

9. Genetic Information

Medical Law ◽  
2019 ◽  
pp. 470-505
Author(s):  
Emily Jackson
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Third Parties ◽  
Test Results ◽  
Genetic Privacy ◽  
Direct To Consumer ◽  
Genetic Test Results ◽  
Recent Developments ◽  
Dna Profiles

All books in this flagship series contain carefully selected substantial extracts from key cases, legislation, and academic debate, providing students with a stand-alone resource. This chapter examines the regulation of access to genetic information. It first discusses various third parties’ interests in genetic test results and DNA profiles, and the extent to which genetic privacy is protected by the law. The chapter then considers the issue of whether genetic discrimination should be treated in the same way as other illegitimate discriminatory practices and also discusses recent developments in the field of genetics, namely direct-to-consumer genetic testing and pharmacogenetics.

Contesting New Markets for Bodily Knowledge

2019 ◽  
pp. 377-396
Author(s):  
Rene Almeling
Keyword(s):  
Genetic Testing ◽  
The United States ◽  
Medical Professional ◽  
Genetic Counselors ◽  
First Century ◽  
Professional Organizations ◽  
Direct To Consumer ◽  
Clinical Relationship ◽  
Bodily Knowledge ◽  
And Control

Using the case of direct-to-consumer genetic testing, this chapter examines how experts contested the emergence of this new market for bodily knowledge in the United States at the beginning of the twenty-first century. Drawing on theoretical innovations in economic sociology and medical sociology, the author analyzes how scientists, clinicians, and genetic counselors made the argument that genetic information should be provided within the context of a clinical relationship and not a commercial relationship. A systematic examination of editorials in scientific and medical journals, statements by medical professional organizations, and interviews with genetic counselors reveals that experts draw a bright line between medical genetic testing and commercial genetic testing by emphasizing the complexity of the information and the different motivations of clinical versus corporate purveyors. The conclusion offers suggestions for how to study markets for bodily knowledge, and it discusses how experts’ claims may affect people’s ability to access and control their own bodily information.

“Better Not to Know?”: Justifiable Limits on the Right to Information in the Realm of dtc Genetic Testing. An Analysis of the European and Spanish Legal Framework

2017 ◽  
Vol 24 (2) ◽  
pp. 175-197 ◽  
Author(s):  
Juan María Martínez Otero
Keyword(s):  
Public Health ◽  
Genetic Testing ◽  
Healthcare Professional ◽  
Present Article ◽  
Legal Framework ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Legal Restrictions ◽  
Right To Information ◽  
The Right

The rapid advance of genetics increases the availability in the market of different genetic tests, which can be acquired directly by consumers without the intermediation of a healthcare professional. Both the European and the Spanish legal framework have restricted the access to these direct-to-consumer (dtc) genetic tests on the grounds of different reasons, such as the protection of consumers or the preservation of public health. The present article discusses these legal restrictions under the light of the right to information.

scholarly journals Evaluating Web-Based Direct-to-Consumer Genetic Tests for Cancer Susceptibility

2020 ◽  
pp. 161-169
Author(s):  
Madison K. Kilbride ◽  
Angela R. Bradbury
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Web Sites ◽  
Clinical Laboratory ◽  
Cancer Susceptibility ◽  
Molecular Technique ◽  
Genetic Tests ◽  
Comprehensive Overview ◽  
Direct To Consumer ◽  
Informed Decisions

PURPOSE Recent years have seen direct-to-consumer (DTC) genetic testing for cancer susceptibility change dramatically. For one, a new model now dominates the market where tests are advertised to consumers but ordered by physicians. For another, many of today’s tests are distinguished from earlier DTC offerings for cancer susceptibility by their scope and potential clinical significance. This review provides a comprehensive overview of available DTC genetic tests for cancer susceptibility and identifies aspects of the DTC testing process that could affect consumers’ ability to make informed decisions about testing and understand their results. METHODS First, we provide an overview of each DTC genetic test for cancer susceptibility that includes information about cost; who orders it; whether variants of uncertain significance are returned; availability of genetic counseling; intended users; management of variant reclassifications; whether it is characterized as diagnostic, actionable, and clinically valid; molecular technique used; and Clinical Laboratory Improvement Amendments/College of American Pathologists status. Second, we identify six aspects of the testing process that could affect consumers’ ability to make informed decisions about testing and interpret their results: How companies use certain terms (eg, medical grade or clinical grade); how companies use consumers’ health information during the ordering process; the extent of genetic counseling provided by companies; companies’ procedures for returning results; the role of company-provided ordering physicians; and companies’ procedures for communicating variant reclassifications. RESULTS On the basis of our review of companies’ Web sites, we believe that consumers would benefit from more information about these aspects of testing. CONCLUSION Providing this information would help consumers make informed decisions about whether to use a particular DTC genetic testing service and, should they choose to pursue testing, understand the implications and limitations of their results.

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.

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