Personal genetics, the European regulations maze and the way out

Personalized Medicine
Moreno Colaiacovo, Keith A Grimaldi

Abstract

Personal genetics and regulations have been the subject of active debate for at least the last 10 years, since the first direct-to-consumer tests were sold in the UK by Sciona Inc. (CO, USA). Opinions range from prohibition to free-for-all and all the shades in between. However, there has been very little progress in formulating regulations and the situation in Europe is particularly confusing, making it difficult for the provider and the consumer alike. The regulations maze is likely to be one major reason why the growth and public uptake has been slow: it is hard for companies to know how to operate and equally hard for consumers to understand what tests are useful versus those of dubious quality. This article gives a brief overview of the current situation regarding what regulations exist and looks closely at the areas where more clarity is needed. These include, exactly what should be regulated? What is health-related data? Who can and who should be able to have access to personal genetics? We conclude with specific proposals for improving the protection for consumers and encouraging growth of useful services.

References

Mar 8, 2002·American Journal of Epidemiology·June E EichnerBerrit C Stroehla
Jul 10, 2008·Nature Biotechnology·Pascal Borry
Sep 5, 2008·Annual Review of Genomics and Human Genetics·Stuart HogarthDavid Melzer
Nov 22, 2008·American Journal of Epidemiology·Cassandra E MurcrayW James Gauderman
Aug 26, 2010·European Journal of Human Genetics : EJHG·UNKNOWN European Society of Human Genetics
Dec 2, 2010·European Journal of Human Genetics : EJHG·Keith A GrimaldiTassos Tagaris
Sep 6, 2011·Annual Review of Medicine·Timothy Caulfield, Amy L McGuire
Dec 14, 2011·Nature Reviews. Genetics·Heidi Carmen Howard, Pascal Borry
Dec 27, 2011·American Journal of Epidemiology·Bhramar MukherjeeNilanjan Chatterjee
Jan 27, 2012·Journal of Community Genetics·Orsolya VargaJorge Sequeiros
Feb 22, 2012·Science·Daniel G MacArthurChris Tyler-Smith
Mar 27, 2012·Nature Genetics·Eli A StahlRobert M Plenge

❮ Previous
Next ❯

Citations

Feb 27, 2013·Pharmacogenomics·Barbara Prainsack, Effy Vayena
Jan 11, 2020·European Journal of Medical Genetics·Ilda HoxhajStefania Boccia

❮ Previous
Next ❯

Methods Mentioned

BETA
genotyping
chips

Software Mentioned

Promethease
WebMD
DIYgenomics
Medscape

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.