Literature DB >> 22477021

Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies.

Anders Nordgren1.   

Abstract

In this paper, I investigate ethical and policy aspects of the genetic services and web-rhetoric of companies offering genetic information direct to consumer, and I do so with a special focus on genetic risk information. On their websites, the companies stress that genetic risk testing for multifactorial complex medical conditions such as cardiovascular disease and cancer may empower the consumer and provide valuable input to personal identity. Critics maintain, on the other hand, that testing can be psychologically harmful, is of limited clinical and preventive value, and vulnerable to misinterpretation. I stress the importance of empirical studies in assessing the pros and cons of direct-to-consumer testing and point out that recent empirical studies indicate that this testing is neither as harmful as feared by critics nor as empowering as promised by the companies. However, the testing is not entirely harmless. Remaining problems include testing of third parties without consent and ownership of genotypic and phenotypic information. Moreover, the testing, although not particularly empowering, may still provide input to self-understanding that some people find valuable. Regarding policy-making, I suggest that self-regulation in terms of best practice guidelines may play an important role, but I also stress that national and international regulation may be necessary.

Entities:  

Year:  2012        PMID: 22477021      PMCID: PMC3890068          DOI: 10.1007/s12687-012-0094-0

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  33 in total

1.  Blurring lines. The research activities of direct-to-consumer genetic testing companies raise questions about consumers as research subjects.

Authors:  Heidi C Howard; Bartha Maria Knoppers; Pascal Borry
Journal:  EMBO Rep       Date:  2010-07-16       Impact factor: 8.807

2.  Personal genomics and individual identities: motivations and moral imperatives of early users.

Authors:  Michelle L McGowan; Jennifer R Fishman; Marcie A Lambrix
Journal:  New Genet Soc       Date:  2010-09-01

3.  Health-care referrals from direct-to-consumer genetic testing.

Authors:  Monica A Giovanni; Matthew R Fickie; Lisa S Lehmann; Robert C Green; Lisa M Meckley; David Veenstra; Michael F Murray
Journal:  Genet Test Mol Biomarkers       Date:  2010-10-28

Review 4.  The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues.

Authors:  Stuart Hogarth; Gail Javitt; David Melzer
Journal:  Annu Rev Genomics Hum Genet       Date:  2008       Impact factor: 8.929

5.  Direct-to-consumer testing: if consumers are not anxious, why are policymakers?

Authors:  Timothy Caulfield
Journal:  Hum Genet       Date:  2011-04-11       Impact factor: 4.132

6.  Social networkers' attitudes toward direct-to-consumer personal genome testing.

Authors:  Amy L McGuire; Christina M Diaz; Tao Wang; Susan G Hilsenbeck
Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

7.  Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine (adopted by the Committee of Ministers on 19 November 1996). Council of Europe Convention of Biomedicine.

Authors: 
Journal:  Hum Reprod       Date:  1997-09       Impact factor: 6.918

Review 8.  Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours.

Authors:  Theresa M Marteau; David P French; Simon J Griffin; A T Prevost; Stephen Sutton; Clare Watkinson; Sophie Attwood; Gareth J Hollands
Journal:  Cochrane Database Syst Rev       Date:  2010-10-06

9.  Public knowledge of benefits of breast and prostate cancer screening in Europe.

Authors:  Gerd Gigerenzer; Jutta Mata; Ronald Frank
Journal:  J Natl Cancer Inst       Date:  2009-08-11       Impact factor: 13.506

10.  Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem.

Authors:  Marieke J H Baars; Lidewij Henneman; Leo P Ten Kate
Journal:  Genet Med       Date:  2005 Nov-Dec       Impact factor: 8.822

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  8 in total

1.  Predictive genetic testing, risk communication, and risk perception: an international expert meeting in Berlin, Germany.

Authors:  Eva Fisher; Steffi Achilles; Holger Tönnies
Journal:  J Community Genet       Date:  2013-12-10

2.  Direct-to-Consumer Genomics: Harmful or Empowering?: It is important to stress that genetic risk is not the same as genetic destiny.

Authors:  Joel C Eissenberg
Journal:  Mo Med       Date:  2017 Jan-Feb

3.  Consumers on the Internet: ethical and legal aspects of commercialization of personalized nutrition.

Authors:  Jennie Ahlgren; Anders Nordgren; Maud Perrudin; Amber Ronteltap; Jean Savigny; Hans van Trijp; Karin Nordström; Ulf Görman
Journal:  Genes Nutr       Date:  2013-03-08       Impact factor: 5.523

Review 4.  Behavioural changes, sharing behaviour and psychological responses after receiving direct-to-consumer genetic test results: a systematic review and meta-analysis.

Authors:  Kelly F J Stewart; Anke Wesselius; Maartje A C Schreurs; Annemie M W J Schols; Maurice P Zeegers
Journal:  J Community Genet       Date:  2017-06-29

Review 5.  Psoriasis and Genetics.

Authors:  Nick Dand; Satveer K Mahil; Francesca Capon; Catherine H Smith; Michael A Simpson; Jonathan N Barker
Journal:  Acta Derm Venereol       Date:  2020-01-30       Impact factor: 3.875

6.  The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research.

Authors:  Mary-Anne Young; Amy Herlihy; Gillian Mitchell; David M Thomas; Mandy Ballinger; Kathy Tucker; Craig R Lewis; Susan Neuhaus; Jane Halliday
Journal:  Clin Sarcoma Res       Date:  2013-07-30

7.  Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.

Authors:  Nicholas Anderson; Caleb Bragg; Andrea Hartzler; Kelly Edwards
Journal:  Appl Transl Genom       Date:  2012-12-01

8.  From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.

Authors:  Jacqueline Savard; Chriselle Hickerton; Sylvia A Metcalfe; Clara Gaff; Anna Middleton; Ainsley J Newson
Journal:  AJOB Empir Bioeth       Date:  2019-12-30
  8 in total

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