Autonomy, the Right Not to Know, and the Right to Know Personal Research Results: What Rights Are There, and Who Should Decide about Exceptions?

The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics
Gert Helgesson

Abstract

This paper defends the right not to know personal health information, while it discards the right of research participants to receive individual research results. Disagreement regarding the right not to know stems from two different conceptions of autonomy, leading to opposing normative conclusions. Researchers occasionally have good reason to inform research participants about incidental findings in spite of the absence of a right to know such information. Such decisions have to be made by health care personnel and researchers on a case by case basis, although external support for the decisions may be available.

References

Jan 1, 1986·The American Journal of Otology·R M Rose
Oct 20, 2001·European Journal of Health Law·Graeme T Laurie
Jan 26, 2002·Theoretical Medicine and Bioethics·J Harris, K Keywood
Jan 26, 2002·Theoretical Medicine and Bioethics·T Takala
Oct 7, 2004·Journal of Medical Ethics·R Andorno
Feb 22, 2007·European Journal of Human Genetics : EJHG·Ulrica SwartlingGert Helgesson
Sep 12, 2007·Nature Biotechnology·Gert HelgessonMats G Hansson
Dec 14, 2011·Cambridge Quarterly of Healthcare Ethics : CQ : the International Journal of Healthcare Ethics Committees·Jonathan Herring, Charles Foster
Mar 1, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Henry S Richardson, Mildred K Cho
Mar 23, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Susan M WolfWendy A Wolf
Jun 29, 2012·European Journal of Human Genetics : EJHG·Gabrielle M ChristenhuszKris Dierickx

❮ Previous
Next ❯

Citations

Feb 21, 2018·Genetic Testing and Molecular Biomarkers·Eric VermeulenMarjanka K Schmidt
Mar 29, 2018·The Hastings Center Report·G Owen Schaefer, Julian Savulescu
Jul 17, 2018·International Journal of Clinical Practice·Magnolia CardonaDanielle Ní Chróinín
Aug 31, 2018·Nature Genetics·Andrew J SchorkNicholas J Schork
Oct 21, 2015·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Alberto Betto Ortiz-OsornoJudith Brooks

❮ 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

European Journal of Heart Failure
Lars H Lund, Inger Ekman
CMAJ : Canadian Medical Association Journal = Journal De L'Association Medicale Canadienne
Sean M Nurmsoo
Anesthesiology
Andrew B Leibowitz
Pediatrics
William P Meehan, Greg L Landry
© 2022 Meta ULC. All rights reserved