The ethical implications of genetic testing in neurodegenerative diseases: A systematic review.

Scandinavian Journal of Caring Sciences
Sanna-Maria NurmiEino Solje

Abstract

Availability of genetic testing in neurodegenerative disorders has developed rapidly. This growing ability is providing specific genetic information to individuals and, in turn, their families, raising ethical concerns. However, family members' perspective is a seldom-studied phenomenon. The aim of this systematic review was to describe the ethical aspect of genetic testing in neurodegenerative diseases from the perspective of at-risk family members. A systematic review of data was performed in accordance with the PRISMA statement. The data search was conducted using the CINAHL, PubMed and Scopus databases to identify original peer-reviewed studies published between January 2009 and April 2019. A total of 24 articles were selected. The data were analysed using inductive content analysis. On the basis of the analysis, four central ethical implications were identified: (i) decision-making in genetic testing as a dilemma: balance between autonomy and responsibility, (ii) the individual's right to make a voluntary and informed decision for genetic testing, (iii) conflicting emotions after knowing one's genetic status and (iv) privacy and confidentiality of genetic information: the fear of genetic discrimination and stigma. The find...Continue Reading

References

May 17, 2005·Journal of Midwifery & Women's Health·Dale Halsey LeaM Patricia Donahue
Jan 24, 2007·Lancet·Francis O Walker
Mar 30, 2007·European Journal of Human Genetics : EJHG·Laura E ForrestMaryAnne Aitken
Jun 11, 2009·BMJ : British Medical Journal·Yvonne BombardUNKNOWN Canadian Respond-HD Collaborative Research Group
Jul 22, 2009·PLoS Medicine·David MoherUNKNOWN PRISMA Group
May 15, 2010·American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics : the Official Publication of the International Society of Psychiatric Genetics·Cheryl ErwinUNKNOWN I-RESPOND-HD Investigators of the Huntington Study Group
May 15, 2010·American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics : the Official Publication of the International Society of Psychiatric Genetics·Janet K WilliamsUNKNOWN I-RESPOND-HD Investigators of the Huntington Study Group
Feb 3, 2011·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Joanna H FanosMichael Benatar
Mar 16, 2012·Journal of Neurology·S ReyesH Chabriat
Jul 12, 2012·European Journal of Human Genetics : EJHG·Alice K HawkinsMichael R Hayden
Jan 8, 2013·Genetic Testing and Molecular Biomarkers·Anita M Y GohUNKNOWN I-Respond-Hd Investigators Of The Huntington Study Group
Mar 2, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Cara MandMartin B Delatycki
Jan 9, 2014·Journal of Genetic Counseling·Tracey M Scuffham, John C MacMillan
Apr 23, 2015·Nursing Ethics·Petra Lilja AnderssonAnna-Karin Edberg
Apr 30, 2015·Journal of Genetic Counseling·Jesús Rivera-NavarroNatividad Mariscal
Jun 26, 2015·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Sandi DheensaAnneke Lucassen
Jul 2, 2015·European Journal of Human Genetics : EJHG·Jan HodgsonJane Halliday
Jul 23, 2015·American Journal of Medical Genetics. Part a·Barbara A BernhardtDebra Skinner
Nov 26, 2015·Lancet·Jee BangBruce L Miller
Oct 21, 2016·Journal of Genetic Counseling·Karin N WagnerJennifer Roggenbuck
May 30, 2017·Lancet·Michael A van EsLeonard H van den Berg
Jun 7, 2017·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Ashley CrookDominic B Rowe
Feb 21, 2018·Journal of Genetic Counseling·Melissa A HolmanVirginia W Norris
Feb 27, 2018·Handbook of Clinical Neurology·Michael M Wang
Mar 1, 2018·European Journal of Human Genetics : EJHG·Diane d'Audiffret Van Haecke, Sandrine de Montgolfier
Apr 8, 2018·Journal of Genetic Counseling·Elisabeth WinnbergAnette Hagberg
Oct 30, 2018·Journal of Huntington's Disease·Miranda F Lewit-MendesMartin B Delatycki
Nov 16, 2018·Journal of Community Genetics·Danielle S DondanvilleJoanna H Fanos
Jan 31, 2019·Journal of Health Psychology·Richard M Smedley, Neil S Coulson
Nov 2, 2019·Journal of Law and the Biosciences·Ellen Wright ClaytonMark A Rothstein

❮ Previous
Next ❯

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.

Related Papers

American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation
R MarsickE Kodish
American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics : the Official Publication of the International Society of Psychiatric Genetics
Amaranta Manrique de LaraMiguel E Rentería
Anadolu Kardiyoloji Dergisi : AKD = the Anatolian Journal of Cardiology
Deniz Ağırbaşlı, Yeşim Işıl Ülman
© 2021 Meta ULC. All rights reserved