Literature DB >> 21119713

Personal genetics: regulatory framework in Europe from a service provider's perspective.

Keith A Grimaldi1, Markus P Look, G Antonio Scioli, Juan Coll Clavero, Stathis Marinos, Tassos Tagaris.   

Abstract

The purpose of this article is to give an overview and discuss the relevant regulations in place, or under consideration, regarding healthcare-related personal genetics services in Europe - this is a rapidly evolving field and in most European Union (EU) countries the regulatory framework is not yet clear. The review will be framed from the perspective of potential service providers (companies, health services and practitioners, including medical, nutritional, complementary, etc), the growing number of which will need to be aware of potential regulatory hurdles existing now and that may arise in the future. The main conclusion from the survey is that strict regulations regarding practitioner-delivered personal genetic-testing services are unlikely to be enforced over the next 5 years in most EU countries, with the exception of Germany. There is broad-based, but by no means universal, support for a strong voluntary code of practice as an alternative to government regulations to protect consumers and to enable all stakeholders to recognise serious and reputable service providers. On the other hand, there are influential bodies calling for strict regulation. As genotyping costs rapidly fall, it is likely that it will become routine and a major challenge that does not seem to be addressed by current debate on regulations is the emergence of companies offering/selling personal genetic services based on a customer's pre-existing genetic results and therefore no actual laboratory testing involved.

Mesh:

Year:  2010        PMID: 21119713      PMCID: PMC3060315          DOI: 10.1038/ejhg.2010.189

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  13 in total

1.  Genetic horoscopes: is it all in the genes? Points for regulatory control of direct-to-consumer genetic testing.

Authors:  Christine Patch; Jorge Sequeiros; Martina C Cornel
Journal:  Eur J Hum Genet       Date:  2009-03-04       Impact factor: 4.246

2.  Integrative genomics, personal-genome tests and personalized healthcare: the future is being built today.

Authors:  Angela Brand
Journal:  Eur J Hum Genet       Date:  2009-03-04       Impact factor: 4.246

3.  Personal genomics services: whose genomes?

Authors:  David Gurwitz; Yael Bregman-Eschet
Journal:  Eur J Hum Genet       Date:  2009-03-04       Impact factor: 4.246

4.  Europe to ban direct-to-consumer genetic tests?

Authors:  Pascal Borry
Journal:  Nat Biotechnol       Date:  2008-07       Impact factor: 54.908

5.  Personal genomics: information can be harmful.

Authors:  D F Ransohoff; M J Khoury
Journal:  Eur J Clin Invest       Date:  2010-01       Impact factor: 4.686

6.  Genetic risk information for common diseases may indeed be already useful for prevention and early detection.

Authors:  J Gulcher; K Stefansson
Journal:  Eur J Clin Invest       Date:  2010-01       Impact factor: 4.686

Review 7.  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

8.  Evaluation of genetic tests for susceptibility to common complex diseases: why, when and how?

Authors:  Caroline Fiona Wright; Mark Kroese
Journal:  Hum Genet       Date:  2009-11-20       Impact factor: 4.132

Review 9.  Provision of genetic services in Europe: current practices and issues.

Authors:  Béatrice Godard; Helena Kääriäinen; Ulf Kristoffersson; Lisbeth Tranebjaerg; Domenico Coviello; Ségolène Aymé
Journal:  Eur J Hum Genet       Date:  2003-12       Impact factor: 4.246

10.  Evaluating the utility of personal genomic information.

Authors:  Morris W Foster; John J Mulvihill; Richard R Sharp
Journal:  Genet Med       Date:  2009-08       Impact factor: 8.822

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  8 in total

Review 1.  Genetic testing in psychiatry: a review of attitudes and beliefs.

Authors:  Ryan E Lawrence; Paul S Appelbaum
Journal:  Psychiatry       Date:  2011       Impact factor: 2.458

2.  Some considerations about a report on 'Public health in an era of genomic-based and personalized medicine' from the Public Health Foundation, Cambridge.

Authors:  Jean-Jacques Cassiman
Journal:  J Community Genet       Date:  2011-02-19

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

Authors:  Anders Nordgren
Journal:  J Community Genet       Date:  2012-04-05

Review 4.  The perspective from EASAC and FEAM on direct-to-consumer genetic testing for health-related purposes.

Authors:  Robin Fears; Volker ter Meulen
Journal:  Eur J Hum Genet       Date:  2012-11-21       Impact factor: 4.246

5.  Direct to consumer genetic testing-law and policy concerns in Ireland.

Authors:  Aisling de Paor
Journal:  Ir J Med Sci       Date:  2017-11-25       Impact factor: 1.568

6.  Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.

Authors:  Jacqueline A Hall; Rena Gertz; Joan Amato; Claudia Pagliari
Journal:  Eur J Hum Genet       Date:  2017-05-03       Impact factor: 4.246

Review 7.  Proposed guidelines to evaluate scientific validity and evidence for genotype-based dietary advice.

Authors:  Keith A Grimaldi; Ben van Ommen; Jose M Ordovas; Laurence D Parnell; John C Mathers; Igor Bendik; Lorraine Brennan; Carlos Celis-Morales; Elisa Cirillo; Hannelore Daniel; Brenda de Kok; Ahmed El-Sohemy; Susan J Fairweather-Tait; Rosalind Fallaize; Michael Fenech; Lynnette R Ferguson; Eileen R Gibney; Mike Gibney; Ingrid M F Gjelstad; Jim Kaput; Anette S Karlsen; Silvia Kolossa; Julie Lovegrove; Anna L Macready; Cyril F M Marsaux; J Alfredo Martinez; Fermin Milagro; Santiago Navas-Carretero; Helen M Roche; Wim H M Saris; Iwona Traczyk; Henk van Kranen; Lars Verschuren; Fabio Virgili; Peter Weber; Jildau Bouwman
Journal:  Genes Nutr       Date:  2017-12-15       Impact factor: 5.523

8.  Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape.

Authors:  L Kalokairinou; H C Howard; S Slokenberga; E Fisher; M Flatscher-Thöni; M Hartlev; R van Hellemondt; J Juškevičius; J Kapelenska-Pregowska; P Kováč; L Lovrečić; H Nys; A de Paor; A Phillips; L Prudil; E Rial-Sebbag; C M Romeo Casabona; J Sándor; A Schuster; S Soini; K H Søvig; D Stoffel; T Titma; T Trokanas; P Borry
Journal:  J Community Genet       Date:  2017-11-18
  8 in total

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