Ethical issues related to computerised family medical histories in sickle cell disease: Inforare
The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarante...
| Κύριοι συγγραφείς: | ; ; ; ; ; ; ; ; |
|---|---|
| Τύπος μέσου: | Ηλεκτρονική πηγή Άρθρο |
| Γλώσσα: | Αγγλικά |
| Έλεγχος διαθεσιμότητας: | HBZ Gateway |
| Interlibrary Loan: | Interlibrary Loan for the Fachinformationsdienste (Specialized Information Services in Germany) |
| Έκδοση: |
2010
|
| Στο/Στη: |
Journal of medical ethics
Έτος: 2010, Τόμος: 36, Τεύχος: 10, Σελίδες: 604-607 |
| Διαθέσιμο Online: |
Volltext (JSTOR) Volltext (lizenzpflichtig) Volltext (lizenzpflichtig) |
MARC
| LEADER | 00000caa a22000002c 4500 | ||
|---|---|---|---|
| 001 | 1816139971 | ||
| 003 | DE-627 | ||
| 005 | 20230427161253.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 220908s2010 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1136/jme.2009.034066 |2 doi | |
| 035 | |a (DE-627)1816139971 | ||
| 035 | |a (DE-599)KXP1816139971 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rda | ||
| 041 | |a eng | ||
| 084 | |a 1 |2 ssgn | ||
| 100 | 1 | |a Franrenet, Sandra |e VerfasserIn |4 aut | |
| 245 | 1 | 0 | |a Ethical issues related to computerised family medical histories in sickle cell disease: Inforare |
| 264 | 1 | |c 2010 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a Computermedien |b c |2 rdamedia | ||
| 338 | |a Online-Ressource |b cr |2 rdacarrier | ||
| 520 | |a The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by the committee and formalised in the patients' information letter: educating patients to aid the recruitment of family members, rules of confidentiality and the disclosure of aggregate, individual and unexpected research results. This paper presents the main issues addressed. | ||
| 601 | |a Historie | ||
| 700 | 1 | |a Duchange, Nathalie |e VerfasserIn |4 aut | |
| 700 | 1 | |a Galactéros, Fréderic |e VerfasserIn |4 aut | |
| 700 | 1 | |a Quantin, Catherine |e VerfasserIn |4 aut | |
| 700 | 1 | |a Cohen, Olivier |e VerfasserIn |4 aut | |
| 700 | 1 | |a Nzouakou, Ruben |e VerfasserIn |4 aut | |
| 700 | 1 | |a Sudraud, Sophie |e VerfasserIn |4 aut | |
| 700 | 1 | |a Hervé, Christian |e VerfasserIn |4 aut | |
| 700 | 1 | |a Moutel, Grégoire |e VerfasserIn |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Journal of medical ethics |d London : BMJ Publ., 1975 |g 36(2010), 10, Seite 604-607 |h Online-Ressource |w (DE-627)323607802 |w (DE-600)2026397-1 |w (DE-576)260773972 |x 1473-4257 |7 nnas |
| 773 | 1 | 8 | |g volume:36 |g year:2010 |g number:10 |g pages:604-607 |
| 856 | |3 Volltext |u http://www.jstor.org/stable/20789528 |x JSTOR | ||
| 856 | 4 | 0 | |u https://doi.org/10.1136/jme.2009.034066 |x Resolving-System |z lizenzpflichtig |3 Volltext |
| 856 | 4 | 0 | |u http://jme.bmj.com/content/36/10/604.abstract |x Verlag |z lizenzpflichtig |3 Volltext |
| 935 | |a mteo | ||
| 951 | |a AR | ||
| ELC | |a 1 | ||
| ITA | |a 1 |t 1 | ||
| LOK | |0 000 xxxxxcx a22 zn 4500 | ||
| LOK | |0 001 4185593856 | ||
| LOK | |0 003 DE-627 | ||
| LOK | |0 004 1816139971 | ||
| LOK | |0 005 20220908053524 | ||
| LOK | |0 008 220908||||||||||||||||ger||||||| | ||
| LOK | |0 035 |a (DE-Tue135)IxTheo#2022-08-02#6E66EA97A3DA83D18FB5317A365CDBD7B7798063 | ||
| LOK | |0 040 |a DE-Tue135 |c DE-627 |d DE-Tue135 | ||
| LOK | |0 092 |o n | ||
| LOK | |0 852 |a DE-Tue135 | ||
| LOK | |0 852 1 |9 00 | ||
| LOK | |0 866 |x JSTOR#http://www.jstor.org/stable/20789528 | ||
| LOK | |0 935 |a ixzs |a ixrk |a zota | ||
| OAS | |a 1 |b inherited from superior work | ||
| ORI | |a SA-MARC-ixtheoa001.raw | ||
