Do patients and research subjects have a right to receive their genomic raw data?: an ethical and legal analysis
As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients...
Gespeichert in:
| Hauptverfasser: | , , |
|---|---|
| Dokumenttyp: | Article (Journal) |
| Sprache: | Englisch |
| Veröffentlicht: |
16 January 2020
|
| In: |
BMC medical ethics
Year: 2020, Jahrgang: 21 |
| ISSN: | 1472-6939 |
| DOI: | 10.1186/s12910-020-0446-y |
| Online-Zugang: | Verlag, lizenzpflichtig, Volltext: https://doi.org/10.1186/s12910-020-0446-y |
| Verfasserangaben: | Christoph Schickhardt, Henrike Fleischer and Eva C. Winkler |
MARC
| LEADER | 00000caa a2200000 c 4500 | ||
|---|---|---|---|
| 001 | 1696149622 | ||
| 003 | DE-627 | ||
| 005 | 20230426182217.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 200427s2020 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1186/s12910-020-0446-y |2 doi | |
| 035 | |a (DE-627)1696149622 | ||
| 035 | |a (DE-599)KXP1696149622 | ||
| 035 | |a (OCoLC)1341316801 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rda | ||
| 041 | |a eng | ||
| 084 | |a 33 |2 sdnb | ||
| 100 | 1 | |a Schickhardt, Christoph |d 1978- |e VerfasserIn |0 (DE-588)1027580122 |0 (DE-627)729428931 |0 (DE-576)373416997 |4 aut | |
| 245 | 1 | 0 | |a Do patients and research subjects have a right to receive their genomic raw data? |b an ethical and legal analysis |c Christoph Schickhardt, Henrike Fleischer and Eva C. Winkler |
| 264 | 1 | |c 16 January 2020 | |
| 300 | |a 12 | ||
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a Computermedien |b c |2 rdamedia | ||
| 338 | |a Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Gesehen am 27.04.2020 | ||
| 520 | |a As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. | ||
| 700 | 1 | |a Fleischer, Henrike |e VerfasserIn |0 (DE-588)1123043671 |0 (DE-627)876556489 |0 (DE-576)476168457 |4 aut | |
| 700 | 1 | |a Winkler, Eva C. |d 1971- |e VerfasserIn |0 (DE-588)1055853065 |0 (DE-627)792734823 |0 (DE-576)411905384 |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t BMC medical ethics |d London : BioMed Central, 2000 |g 21(2020) Artikel-Nummer 7, 12 Seiten |h Online-Ressource |w (DE-627)326645403 |w (DE-600)2041552-7 |w (DE-576)107014807 |x 1472-6939 |7 nnas |a Do patients and research subjects have a right to receive their genomic raw data? an ethical and legal analysis |
| 773 | 1 | 8 | |g volume:21 |g year:2020 |g extent:12 |a Do patients and research subjects have a right to receive their genomic raw data? an ethical and legal analysis |
| 856 | 4 | 0 | |u https://doi.org/10.1186/s12910-020-0446-y |x Verlag |x Resolving-System |z lizenzpflichtig |3 Volltext |
| 951 | |a AR | ||
| 992 | |a 20200427 | ||
| 993 | |a Article | ||
| 994 | |a 2020 | ||
| 998 | |g 1055853065 |a Winkler, Eva C. |m 1055853065:Winkler, Eva C. |d 910000 |d 910100 |d 50000 |e 910000PW1055853065 |e 910100PW1055853065 |e 50000PW1055853065 |k 0/910000/ |k 1/910000/910100/ |k 0/50000/ |p 3 |y j | ||
| 998 | |g 1123043671 |a Fleischer, Henrike |m 1123043671:Fleischer, Henrike |d 20000 |d 20900 |e 20000PF1123043671 |e 20900PF1123043671 |k 0/20000/ |k 1/20000/20900/ |p 2 | ||
| 998 | |g 1027580122 |a Schickhardt, Christoph |m 1027580122:Schickhardt, Christoph |d 70000 |d 70100 |e 70000PS1027580122 |e 70100PS1027580122 |k 0/70000/ |k 1/70000/70100/ |p 1 |x j | ||
| 999 | |a KXP-PPN1696149622 |e 3636963813 | ||
| BIB | |a Y | ||
| SER | |a journal | ||
| JSO | |a {"id":{"eki":["1696149622"],"doi":["10.1186/s12910-020-0446-y"]},"origin":[{"dateIssuedKey":"2020","dateIssuedDisp":"16 January 2020"}],"name":{"displayForm":["Christoph Schickhardt, Henrike Fleischer and Eva C. Winkler"]},"relHost":[{"pubHistory":["1.2000 -"],"part":{"text":"21(2020) Artikel-Nummer 7, 12 Seiten","volume":"21","extent":"12","year":"2020"},"type":{"bibl":"periodical","media":"Online-Ressource"},"note":["Gesehen am 26. Januar 2016"],"disp":"Do patients and research subjects have a right to receive their genomic raw data? an ethical and legal analysisBMC medical ethics","language":["eng"],"recId":"326645403","title":[{"title":"BMC medical ethics","title_sort":"BMC medical ethics"}],"physDesc":[{"extent":"Online-Ressource"}],"origin":[{"publisherPlace":"London","dateIssuedKey":"2000","publisher":"BioMed Central","dateIssuedDisp":"2000-"}],"id":{"issn":["1472-6939"],"eki":["326645403"],"zdb":["2041552-7"]}}],"physDesc":[{"extent":"12 S."}],"title":[{"title_sort":"Do patients and research subjects have a right to receive their genomic raw data?","title":"Do patients and research subjects have a right to receive their genomic raw data?","subtitle":"an ethical and legal analysis"}],"person":[{"family":"Schickhardt","given":"Christoph","display":"Schickhardt, Christoph","roleDisplay":"VerfasserIn","role":"aut"},{"role":"aut","roleDisplay":"VerfasserIn","display":"Fleischer, Henrike","given":"Henrike","family":"Fleischer"},{"display":"Winkler, Eva C.","roleDisplay":"VerfasserIn","role":"aut","family":"Winkler","given":"Eva C."}],"recId":"1696149622","language":["eng"],"note":["Gesehen am 27.04.2020"],"type":{"media":"Online-Ressource","bibl":"article-journal"}} | ||
| SRT | |a SCHICKHARDDOPATIENTS1620 | ||