Literature DB >> 12569188

Consent and confidentiality in genetics: whose information is it anyway?

A Kent1.   

Abstract

Against a background of increasing regulation regarding access to medical information and the presentation of patients' confidentiality, the case of genetic information raises interesting questions about whether the application of general rules is appropriate in all situations. Whilst all genetic information is not equally sensitive, some of it is highly predictive. It also allows deductions to be made about other family members. It may not be regarded as particularly sensitive when compared to other types of medical information and those to whom it applies may not be as anxious about preserving their confidentiality as compared with-for example, the prospect of seeing research into cause and cures for rare diseases put in hand. These distinctions also find resonance with the general public. Resolving conflicting tensions will require subtlety, not a blunt "one size fits all" model.

Entities:  

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction

Mesh:

Year:  2003        PMID: 12569188      PMCID: PMC1733668          DOI: 10.1136/jme.29.1.16

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  9 in total

1.  Conference report--highlights of the 4th EMBO/EMBL joint conference on genetics, determinism and human freedom, November 14-15, 2003; Heidelberg, Germany.

Authors:  Elena Armandola
Journal:  MedGenMed       Date:  2004-02-09

2.  Public perceptions of ethical issues regarding adult predictive genetic testing.

Authors:  Douglas K Martin; Heather L Greenwood; Jeff Nisker
Journal:  Health Care Anal       Date:  2009-03-14

3.  The risks of absolute medical confidentiality.

Authors:  M A Crook
Journal:  Sci Eng Ethics       Date:  2011-05-25       Impact factor: 3.525

4.  The devil is in the details: confidentiality challenges in the age of genetics.

Authors:  Barbara J Daly; Ashley Rosko; Shulin Zhang; Hillard M Lazarus
Journal:  HEC Forum       Date:  2015-03

5.  Sharing patient data: competing demands of privacy, trust and research in primary care.

Authors:  Margaret A Stone; Sarah A Redsell; Jennifer T Ling; Alastair D Hay
Journal:  Br J Gen Pract       Date:  2005-10       Impact factor: 5.386

Review 6.  From Beyond the Grave: Use of Medical Information from the Deceased to Guide Care of Living Relatives.

Authors:  Shereen Tadros; Helena Carley; Anneke Lucassen
Journal:  Curr Genet Med Rep       Date:  2020-11-24

7.  Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.

Authors:  Sabina Gainotti; Cathy Turner; Simon Woods; Anna Kole; Pauline McCormack; Hanns Lochmüller; Olaf Riess; Volker Straub; Manuel Posada; Domenica Taruscio; Deborah Mascalzoni
Journal:  Eur J Hum Genet       Date:  2016-02-10       Impact factor: 4.246

8.  Genetic Testing for Minors: Comparison between Italian and British Guidelines.

Authors:  Pamela Tozzo; Luciana Caenazzo; Daniele Rodriguez
Journal:  Genet Res Int       Date:  2012-03-06

Review 9.  Privacy and confidentiality measures in genetic testing and counselling: arguing on genetic exceptionalism again?

Authors:  Magdalena M Witt; Michał P Witt
Journal:  J Appl Genet       Date:  2016-02-17       Impact factor: 3.240

  9 in total

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