Direct-to-consumer genetic testing: where and how does genetic counseling fit?

Author:

Middleton Anna1,Mendes Álvaro2,Benjamin Caroline M34,Howard Heidi Carmen5

Affiliation:

1. Society & Ethics Research Group, Connecting Science, Wellcome, Genome Campus, Cambridge, UK

2. UnIGENe & Centre for Predictive & Preventive Genetics (CGPP), IBMC – Institute for Molecular & Cell Biology, i3S – Instituto de Investigação e Inovação em  Saúde, Universidade do Porto, Portugal

3. School of Community Health & Midwifery, University of Central Lancashire, Preston, UK

4. Liverpool Women's NHS Hospital Trust, Liverpool, UK

5. Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden

Abstract

Direct-to-consumer genetic testing for disease ranges from well-validated diagnostic and predictive tests to ‘research’ results conferring increased risks. While being targeted at public curious about their health, they are also marketed for use in reproductive decision-making or management of disease. By virtue of being ‘direct-to-consumer’ much of this testing bypasses traditional healthcare systems. We argue that direct-to-consumer genetic testing companies should make genetic counseling available, pre- as well as post-test. While we do not advocate that mandatory genetic counseling should gate-keep access to direct-to-consumer genetic testing, if the testing process has the potential to cause psychological distress, then companies have a responsibility to provide support and should not rely on traditional healthcare systems to pick up the pieces. A video abstract is available for this article via this link .

Publisher

Future Medicine Ltd

Subject

Pharmacology,Molecular Medicine,General Medicine

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3. Evidence on the Impact of Direct-to-Consumer Pharmacogenetic Testing;Encyclopedia of Evidence in Pharmaceutical Public Health and Health Services Research in Pharmacy;2023

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