The risk of re-identification versus the need to identify individuals in rare disease research

Hansson, Mats G.Uppsala universitet,Centrum för forsknings- och bioetik (author)

There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.

Lochmuller, HannsNewcastle Univ, Inst Med Genet, John Walton Muscular Dystrophy Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England.,Newcastle University (author)
Riess, OlafUniv Tubingen, Rare Dis Ctr, Inst Med Genet & Appl Genom, Tubingen, Germany. (author)
Schaefer, FranzHeidelberg Univ, Ctr Pediat & Adolescent Med, Div Pediat Nephrol, Heidelberg, Germany.,Heidelberg University (author)
Orth, MichaelUlm Univ Hosp, Dept Neurol, Ulm, Germany. (author)
Rubinstein, YaffaNIH, ORDR, Natl Ctr Adv Translat Sci, Bldg 10, Bethesda, MD 20892 USA. (author)
Molster, CaronDept Hlth Govt Western Australia, Off Populat Hlth Genom, Publ Hlth & Clin Serv Div, Perth, WA, Australia. (author)
Dawkins, HughDept Hlth Govt Western Australia, Off Populat Hlth Genom, Publ Hlth & Clin Serv Div, Perth, WA, Australia.;Murdoch Univ, Ctr Comparat Genom, Murdoch, WA, Australia.;Curtin Univ Technol, Ctr Populat Hlth Res, Bentley, WA, Australia.;Univ Western Australia, Sch Pathol & Lab Med, Nedlands, WA, Australia. (author)
Taruscio, DomenicaIst Super Sanita, Natl Ctr Rare Dis, Rome, Italy. (author)
Posada, ManuelSpainRDR, ISCIII, Inst rare Dis Res, Madrid, Spain.;CIBERER, Madrid, Spain. (author)
Woods, SimonNewcastle Univ, Policy Eth & Life Sci Res Ctr, Newcastle Upon Tyne, Tyne & Wear, England. (author)
Uppsala universitetCentrum för forsknings- och bioetik (creator_code:org_t)

In:European Journal of Human Genetics: Springer Science and Business Media LLC24:11, s. 1553-15581018-48131476-5438

By the author/editor: Hansson, Mats G.; Lochmuller, Hann ...; Riess, Olaf; Schaefer, Franz; Orth, Michael; Rubinstein, Yaff ...; show more...; Molster, Caron; Dawkins, Hugh; Taruscio, Domeni ...; Posada, Manuel; Woods, Simon; show less...

About the subject

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Medical Ethics

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Other Medical an ...; and Other Medical an ...

Kungliga biblioteket hanterar dina personuppgifter i enlighet med EU:s dataskyddsförordning (2018), GDPR. Läs mer om hur det funkar här.
Så här hanterar KB dina uppgifter vid användning av denna tjänst.