Relevant Information and Informed Consent in Research: In Defense of the Subjective Standard of Disclosure

Science and Engineering Ethics
Vilius DranseikaMarcin Waligora

Abstract

In this article, we seek to contribute to the debate on the requirement of disclosure in the context of informed consent for research. We defend the subjective standard of disclosure and describe ways to implement this standard in research practice. We claim that the researcher should make an effort to find out what kinds of information are likely to be relevant for those consenting to research. This invites researchers to take empirical survey information seriously, attempt to understand the cultural context, talk to patients to be better able to understand what can be potentially different concerns and interests prevalent in the target population. The subjective standard of disclosure should be seen as a moral ideal that perhaps can never be perfectly implemented but still can and should be used as a normative ideal guiding research practice. In the light of these discussions, we call for more empirical research on what considerations are likely to be perceived as relevant by potential research participants recruited from different socio-economic and cultural groups.

References

Jan 1, 1986·The American Journal of Otology·R M Rose
Aug 31, 1972·The New England Journal of Medicine·F J Ingelfinger
Dec 1, 1994·Journal of Medical Ethics·D Dickenson
Jul 11, 1998·The Journal of Legal Medicine·K Morin
Jul 2, 2002·Archives of Internal Medicine·Dave Wendler, Ezekiel Emanuel
Sep 18, 2004·Health & Social Care in the Community·Mahvash Hussain-GamblesBrenda Leese
Mar 3, 2006·The Lancet Oncology·Mats G HanssonGert Helgesson
Nov 13, 2008·The American Journal of Bioethics : AJOB·Sara Chandros HullBenjamin S Wilfond
Nov 3, 2009·American Journal of Human Genetics·David J KaufmanKathy L Hudson
Oct 13, 2010·Public Health Genomics·A J GoldenbergR R Sharp
Dec 14, 2011·Cambridge Quarterly of Healthcare Ethics : CQ : the International Journal of Healthcare Ethics Committees·Gert Helgesson
May 11, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Jodyn PlattDavid Kaufman
Nov 6, 2013·Clinical Trials : Journal of the Society for Clinical Trials·Katie GilliesMarion K Campbell
Jan 13, 2015·Drug and Alcohol Dependence·Marilyn E CoorsSusan K Mikulich-Gilbertson
Oct 1, 2015·Medicine, Health Care, and Philosophy·Vilius DranseikaMarcin Waligora

❮ Previous
Next ❯

Citations

Aug 21, 2019·European Journal of Clinical Pharmacology·Nut KoonrungsesomboonJuntra Karbwang
Sep 17, 2018·BMC Medical Ethics·Juntra KarbwangUNKNOWN FERCAP Multi-Country Research Team
Jan 19, 2021·The American Journal of Bioethics : AJOB·Joseph Millum, Danielle Bromwich
Mar 31, 2021·European Journal of Cancer : Official Journal for European Organization for Research and Treatment of Cancer (EORTC) [and] European Association for Cancer Research (EACR)·Eline M BunnikMartina C Cornel
May 3, 2021·BMC Medical Ethics·Marcin OrzechowskiFlorian Steger

❮ Previous
Next ❯

Methods Mentioned

BETA
contraception

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.