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

European Journal of Human Genetics

Volumn 24, Issue 11, 2016, Pages 1553-1558

  Hansson, Mats G ^a   Lochmüller, Hanns ^b   Riess, Olaf ^c   Schaefer, Franz ^d   Orth, Michael ^e   Rubinstein, Yaffa ^f   Molster, Caron ^g   Dawkins, Hugh ^g,h,i,j   Taruscio, Domenica ^k   Posada, Manuel ^l   Woods, Simon ^m  

^a UPPSALA UNIVERSITY   (Sweden)

^b NEWCASTLE UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF TÜBINGEN   (Germany)

^d UNIVERSITY OF HEIDELBERG   (Germany)

^e UNIVERSITY HOSPITAL ULM   (Germany)

^f NATIONAL INSTITUTES OF HEALTH   (United States)

^g DEPARTMENT OF HEALTH   (Australia)

^h MURDOCH UNIVERSITY   (Australia)

ⁱ CURTIN UNIVERSITY   (Australia)

^j UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

^k ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^l INSTITUTO DE SALUD CARLOS III   (Spain)

^m NEWCASTLE UNIVERSITY   (United Kingdom)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CONFIDENTIALITY; HEALTH CARE POLICY; HUMAN; INFORMED CONSENT; MEDICAL ETHICS; MEDICAL RESEARCH; NEEDS ASSESSMENT; PARTICIPATORY RESEARCH; PATIENT AUTONOMY; PATIENT IDENTIFICATION; PRIORITY JOURNAL; PRIVACY; PUBLIC HEALTH; RARE DISEASE; RESEARCH SUBJECT; RISK ASSESSMENT; RISK BENEFIT ANALYSIS; ETHICS; GENETIC PRIVACY; GENETIC SCREENING; GENETICS; INTERNATIONAL COOPERATION; LEGISLATION AND JURISPRUDENCE; PROCEDURES; RARE DISEASES;

BIOMEDICAL RESEARCH; GENETIC PRIVACY; GENETIC TESTING; HUMANS; INTERNATIONAL COOPERATION; RARE DISEASES;

EID: 84969930878     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2016.52     Document Type: Article

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