Literature DB >> 19488835

Health-related direct-to-consumer genetic testing: a review of companies' policies with regard to genetic testing in minors.

Pascal Borry1, Heidi C Howard, Karine Sénécal, Denise Avard.   

Abstract

More and more companies are advertising and selling genetic tests directly to consumers. Considering the ethical, legal, and psychological concerns surrounding genetic testing in minors, a study of companies' websites was performed in order to describe and analyze their policies with respect to this issue. Of the 29 companies analyzed, 13 did not provide any information about this matter, eight companies allowed genetic testing upon parental request, four companies stated that their website is not directed to children under 18 years, and four companies suggested that in order to be tested, applicants should have reached the age of legal majority. If private companies offer genetic tests which are also offered in a clinical setting, can they be expected to adhere to the existing clinical guidelines with regard to these tests? If so, a certain ambiguity exists. Many companies are emphasizing in their disclaimers that their services are not medical services and should not be used as a basis for making medical decisions. Nonetheless, it remains debatable whether genetic testing in minors would be appropriate in this context. In line with the Advisory Committee on Genetic Testing, the Human Genetics Commission addressed the problem of non-consensual testing and recommended not to supply genetic testing services directly to those under the age of 16 or to those not able to make a competent decision regarding testing.

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Year:  2009        PMID: 19488835     DOI: 10.1007/s10689-009-9253-9

Source DB:  PubMed          Journal:  Fam Cancer        ISSN: 1389-9600            Impact factor:   2.375


  15 in total

1.  Limitations of direct-to-consumer advertising for clinical genetic testing.

Authors:  Sarah E Gollust; Sara Chandros Hull; Benjamin S Wilfond
Journal:  JAMA       Date:  2002-10-09       Impact factor: 56.272

2.  A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalize health interventions.

Authors:  A Cecile J W Janssens; Marta Gwinn; Linda A Bradley; Ben A Oostra; Cornelia M van Duijn; Muin J Khoury
Journal:  Am J Hum Genet       Date:  2008-03       Impact factor: 11.025

3.  Regulators weigh risks of consumer genetic tests.

Authors:  Charles Schmidt
Journal:  Nat Biotechnol       Date:  2008-02       Impact factor: 54.908

4.  Direct-to-consumer genome scanning services. Also for children?

Authors:  Pascal Borry; Heidi C Howard; Karine Sénécal; Denise Avard
Journal:  Nat Rev Genet       Date:  2009-01       Impact factor: 53.242

5.  Guidelines for genetic testing of healthy children.

Authors: 
Journal:  Paediatr Child Health       Date:  2003-01       Impact factor: 2.253

6.  Public health. A case study of personalized medicine.

Authors:  S H Katsanis; G Javitt; K Hudson
Journal:  Science       Date:  2008-04-04       Impact factor: 47.728

Review 7.  Ethical and clinical practice considerations for genetic counselors related to direct-to-consumer marketing of genetic tests.

Authors:  Christopher H Wade; Benjamin S Wilfond
Journal:  Am J Med Genet C Semin Med Genet       Date:  2006-11-15       Impact factor: 3.908

Review 8.  Developmental tasks of childhood and adolescence: implications for genetic testing.

Authors:  J H Fanos
Journal:  Am J Med Genet       Date:  1997-07-11

Review 9.  Risk as moral danger: the social and political functions of risk discourse in public health.

Authors:  D Lupton
Journal:  Int J Health Serv       Date:  1993       Impact factor: 1.663

10.  Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors.

Authors: 
Journal:  Am J Hum Genet       Date:  1995-11       Impact factor: 11.025

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  23 in total

1.  Users' motivations to purchase direct-to-consumer genome-wide testing: an exploratory study of personal stories.

Authors:  Yeyang Su; Heidi C Howard; Pascal Borry
Journal:  J Community Genet       Date:  2011-05-28

2.  Is there a doctor in the house? : The presence of physicians in the direct-to-consumer genetic testing context.

Authors:  Heidi Carmen Howard; Pascal Borry
Journal:  J Community Genet       Date:  2011-09-06

3.  An exploration of genetic health professionals' experience with direct-to-consumer genetic testing in their clinical practice.

Authors:  Gemma R Brett; Sylvia A Metcalfe; David J Amor; Jane L Halliday
Journal:  Eur J Hum Genet       Date:  2012-02-08       Impact factor: 4.246

4.  Legislation on direct-to-consumer genetic testing in seven European countries.

Authors:  Pascal Borry; Rachel E van Hellemondt; Dominique Sprumont; Camilla Fittipaldi Duarte Jales; Emmanuelle Rial-Sebbag; Tade Matthias Spranger; Liam Curren; Jane Kaye; Herman Nys; Heidi Howard
Journal:  Eur J Hum Genet       Date:  2012-01-25       Impact factor: 4.246

5.  Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?

Authors:  Heidi Carmen Howard; Denise Avard; Pascal Borry
Journal:  Eur J Hum Genet       Date:  2011-06-01       Impact factor: 4.246

6.  Parents' attitudes toward pediatric genetic testing for common disease risk.

Authors:  Kenneth P Tercyak; Sharon Hensley Alford; Karen M Emmons; Isaac M Lipkus; Benjamin S Wilfond; Colleen M McBride
Journal:  Pediatrics       Date:  2011-04-18       Impact factor: 7.124

7.  How Much Control Do Children and Adolescents Have over Genomic Testing, Parental Access to Their Results, and Parental Communication of Those Results to Others?

Authors:  Ellen Wright Clayton
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

8.  Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.

Authors:  Josephine Johnston; John D Lantos; Aaron Goldenberg; Flavia Chen; Erik Parens; Barbara A Koenig
Journal:  Hastings Cent Rep       Date:  2018-07       Impact factor: 2.683

9.  Paternity testing under the cloak of recreational genetics.

Authors:  Nathalie Moray; Katherina E Pink; Pascal Borry; Maarten Hd Larmuseau
Journal:  Eur J Hum Genet       Date:  2017-03-08       Impact factor: 4.246

10.  Interest, rationale, and potential clinical applications of genetic testing for mood disorders: a survey of stakeholders.

Authors:  Jessica A Erickson; Mildred K Cho
Journal:  J Affect Disord       Date:  2012-09-28       Impact factor: 4.839

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