6. Investigating the Societal Impacts of Direct-to-Consumer Genetic Testing, and its Relationship to Mortality Salience, Attraction to Legacy and Attraction to Leisure

2018 ◽  
Author(s):  
Laura Crimi
Keyword(s):  
Genetic Testing ◽  
Online Survey ◽  
Homo Sapiens ◽  
Preliminary Investigation ◽  
Mortality Salience ◽  
Societal Implications ◽  
Personal Genome ◽  
New Era ◽  
Direct To Consumer ◽  
Personal Genome Testing

  Homo sapiens are the only species that are aware that one’s life is impermanent, and that responds to that awareness with anxiety. Adaptive anxiety buffers include delusion through ‘legacy drive’ and ‘leisure drive’, which have been proposed as fundamental components in defining the evolutionary roots of human nature and sociocultural evolution. This study evaluates how legacy and leisure drive are impacted by mortality salience and ideas of genetic testing, and analyzes advancements in genomic technology and its societal implications. In this project, indicators of variation in legacy drive and leisure drive, due to mortality salience and genetic testing priming, were assessed based on participant responses (n=1449) from faculty and students at Queen’s University in an online survey. Direct-to-consumer personal genome testing is poised to usher in a new era of medicine through empowering individuals to learn and understand their own genetic make-up. Behavioural changes between sexes were evaluated in terms of Darwinian theory. This was assessed in conjunction with domains of legacy and connected with participant responses to recent and expanding opportunities for genomic testing—including in the context of so-called ‘designer babies—with potential for playing a role in modulating the evolution of humans both biologically and culturally. Results will be used to test for relationships between variation in demographic/gender traits and preferences associated with mortality awareness, and domains of legacy and leisure. Preliminary investigation reveals that mortality salience is positively correlated with both leisure and legacy drive. Further analysis of results will be presented at the conference.

scholarly journals Social Networkers' Attitudes Toward Direct-to-Consumer Personal Genome Testing

2009 ◽  
Vol 9 (6-7) ◽  
pp. 3-10 ◽  
Author(s):  
Amy L. McGuire ◽  
Christina M. Diaz ◽  
Tao Wang ◽  
Susan G. Hilsenbeck
Keyword(s):  
Personal Genome ◽  
Direct To Consumer ◽  
Personal Genome Testing

Correlation of education, age, and health insurance status with attitudes about and preferences for direct-to-consumer BRCA testing

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e22116-e22116
Author(s):  
S. W. Gray ◽  
D. Smith ◽  
L. Karp ◽  
C. O'Grady ◽  
R. Hornik ◽  
...  
Keyword(s):  
Health Insurance ◽  
Genetic Testing ◽  
Online Survey ◽  
Participation Rate ◽  
Brca Testing ◽  
High Quality ◽  
Convenience Sample ◽  
Health Insurance Status ◽  
Direct To Consumer ◽  
Positive Attitudes

e22116 Background: Direct-to-consumer (DTC) cancer genetic testing is increasingly common. However, little is know about peoples' attitudes about or preferences for DTC testing as compared to clinic-based genetic testing. Methods: We surveyed a convenience sample of 257 women without prior BRCA testing/counseling experience about their attitudes about and intentions to get online BRCA testing (90% participation rate). Subjects completed baseline interviews, viewed a modified commercial DTC website and completed an online survey. Results: Sample characteristics: mean age 37 (range 19–71), 80% white, mean education 3 years college, 45% with a household income <$50,000, 3% with a history of breast/ovarian cancer and mean Frank risk 4.7%. 64% of women expressed interest in BRCA testing at baseline and 24% intended to get tested in the next year. After viewing the website, 22% of women said that they would prefer DTC testing, 60% said that they would prefer clinic-based testing and 18% were indifferent. Overall, women believed that DTC testing would be more convenient (p <0.001), offer greater privacy (p <0.01), and be less likely to lead to discrimination (p <0.001) while clinic testing would provide more information (p <0.001) and counseling (p <0.001). After adjusting for confounders, older and less highly educated women had more positive attitudes about DTC BRCA testing (adjusted odds ratio (OR) 4.20, p= 0.02 and OR 10.3, p=0.03 high school (HS) vs. college and OR 16.1, p=0.02 HS vs. graduate school). Women with no health insurance and more positive attitudes about DTC genetic testing were more likely to prefer DTC genetic testing over clinic testing (adjusted OR 3.1, p=0.03 and OR 3.7, p<0.01). There were no associations between race and outcomes. Conclusions: A substantial minority of women expressed a preference for DTC BRCA testing after viewing a modified commercial website. Preferential interest in DTC testing by less educated and uninsured populations makes it especially critical that these sites provide high quality services. Without high quality service, the availability of DTC testing may only exacerbate disparities in genetic services and prevention. No significant financial relationships to disclose.

Informed Consent in Direct-to-Consumer Personal Genome Testing: The Outline of A Model between Specific and Generic Consent

Bioethics ◽  
2012 ◽  
Vol 28 (7) ◽  
pp. 343-351 ◽  
Author(s):  
Eline M. Bunnik ◽  
A. Cecile J.W. Janssens ◽  
Maartje H.N. Schermer
Keyword(s):  
Informed Consent ◽  
Personal Genome ◽  
Direct To Consumer ◽  
Personal Genome Testing

scholarly journals Impact of direct-to-consumer genetic testing on Australian clinical genetics services

2020 ◽  
Author(s):  
Michael Millward ◽  
Jane Tiller ◽  
Michael Bogwitz ◽  
Helen Kincaid ◽  
Shelby Taylor ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Genetic Risk ◽  
Online Survey ◽  
Third Party ◽  
Clinical Genetics ◽  
Direct To Consumer ◽  
Risk Estimates ◽  
Genetics Services ◽  
Clinical Genetics Services ◽  
The Impact

AbstractPurposeThe increasing popularity of direct-to-consumer genetic testing (DTCGT) is thought to be creating a burden on clinical genetic health services worldwide. However, no studies have collected recent evidence regarding the extent of this impact in Australia.MethodsWe administered an online survey to Australian clinical genetics services, asking questions related to DTCGT-related referrals received and outcomes over the past 10 years.ResultsEleven publicly-funded clinical genetics services completed the survey, reporting over 100 DTCGT-related referrals. Most referrals (83%) were made by general practitioners seeking interpretation of DTCGT results. More than 30% of referrals related to imputed genetic risk estimates generated from third-party web-based software tools. Services reported low validation rates for DTCGT results (<10%). Procedures for managing DTCGT referrals and granting appointments were variable between services, with most services (8/11) lacking specific procedures.ConclusionOur study helps quantify the impact of DTCGT on clinical genetics services, and highlights the impact of imputed genetic risk estimates generated from third-party software.

O-060 Ethical implications of the direct to consumer genetic testing. What should donors and recipients know?

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
L Frith
Keyword(s):  
Genetic Testing ◽  
Extended Family ◽  
New Era ◽  
Online Systems ◽  
Donor Conception ◽  
Ethical Implications ◽  
Direct To Consumer ◽  
Regulatory Systems ◽  
The Many ◽  
The Uk

Abstract Abstract text The growth in the use of direct-to-consumer-genetic testing (DTCGT) is having a major impact on sperm, egg and embryo donor conception (hereafter donor conception). DTCGT services include family history sites, e.g. Ancestry.com, and medical testing sites, e.g.23andme. Despite the many different motivations people have for using these services, it is now easier to search and find donor relatives, with donor-conceived people, recipients of donor gametes and embryos, and donors all using these services to make hitherto unlikely connections. Some individuals have found large numbers of donor-siblings, while donors have been traced by their adult donor offspring. DTCGT can also reveal unexpected origins with the numbers of people finding out they are donor-conceived through DTCGT rapidly increasing. For example, one woman discovered she was donor conceived after using 23andme to assess her risk of breast cancer, an eventuality she had never anticipated when she decided to take that test. The increasing use of DTCGT has led to claims that donor anonymity is dead and we are entering a new era where the possibilities of finding our genetic relatives and extended family have dramatically expanded. These developments will produce new landscapes where different systems collide and interact, creating new ways of locating and finding donor relatives. In the UK for example, information on genetic relations, donors and donor siblings, is located within two very different systems: ‘official’ regulatory systems, such as central registers of information held by government bodies such as the Human Fertilisation and Embryology Authority’s (HFEA) registers; and emerging digital online systems, of DTCGT. This paper will explore how these new developments interact with existing ways of finding out information about donor relatives and consider the ethical and legal issues and challenges for fertility practice.

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