Savunmasız Gruplarda Etik Dışı Davranışlar ve Uygulamalar
Özet
Referanslar
Pittaway E, Bartolomei L, Hugman R. ‘Stop stealing our stories’: The ethics of research with vulnerable groups, Journal of Human Rights Practice. 2010;2(2): 229–251. https://doi.org/10.1093/jhuman/huq004
White MG. Why human subjects research protection is important. Ochsner Journal. 2020;20(1): 16-33. doi: 10.31486/toj.20.5012.
Adashi EY, Walters LB, & Menikoff JA. The Belmont Report at 40: Reckoning with time. American Journal of Public Health. 2018; 108(10), 1345–1348. https://doi.org/10.2105/AJPH.2018.304580
Miracle VA. The Belmont Report: The triple crown of research ethics. Dimensions of Critical Care Nursing. 2016;35(4): 223-228. doi: 10.1097/DCC.0000000000000186
Nagai H, Nakazawa E, Akabayashi A. The creation of the Belmont Report and its effect on ethical principles: a historical study. Monash Bioethics Review. 2022;40(2): 157-170. doi: 10.1007/s40592-022-00165-5.
Barrow JM, Brannan GD, & Khandhar PB. Research ethics. In: StatPearls. StatPearls Publishing. 2022.
Davidson N, Hammarberg K, & Fisher J. Ethical considerations in research with people from refugee and asylum seeker backgrounds: a systematic review of national and ınternational ethics guidelines. Bioethical Inquiry. 2024;21: 261-284. https://doi.org/10.1007/s11673-023-10297-w
Gordon BG. Vulnerability in research: basic ethical concepts and general approach to review. Ochsner Journal. 2020;20(1): 34-38. doi: 10.31486/toj.19.0079.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report 1979. (20/11/2024 tarihinde https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html adresinden ulaşılmıştır).
The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report ethical and policy issues in research involving human subjects. 2001. (16/11/2024 tarihinde https://bioethicsarchive.georgetown.edu/nbac/human/oversumm.htmladresinden ulaşılmıştır).
World Medical Associtation [WMA]. Declaration of Helsinki – Ethical principles for medical research involving human participants. 2024. The 75. WMA General Assembly, Helsinki, Finland, October 2024. (30.11.2024 tarihinde https://www.wma.net/policies-post/wma-declaration-of-helsinki/ adresinden ulaşılmıştır).
Jain S, Kuppili PP, Pattanayak RD, et al. Ethics in psychiatric research: Issues and recommendations. Indian Journal of Psychological Medicine. 2017;39(5): 558-565. https://doi.org/10.4103/IJPSYM.IJPSYM_131_17
Açıkgöz PÖ. Küçük ve kısıtlılara yönelik klinik araştırmalarda velayet ve vesayet: Geleneksel derleme. Türkiye Klinikleri Tıp Etiği-Hukuku-Tarihi Dergisi. 2022;30(3): 332-341.
National Library of Medicine. Variolation. History of Medicine at NLM. 2024. (30.11.024 tarihinde https://www.nlm.nih.gov/exhibition/smallpox/sp_variolation.html adresinden ulaşılmıştır).
Türkiye Cumhuriyeti Anayasa Mahkemesi. Türkiye Cumhuriyeti Anayasası. 1982. (16/11/2024 tarihinde https://www.anayasa.gov.tr/tr/mevzuat/anayasa/ adresinden ulaşılmıştır).
Altuntaş Çalım G, Elmas S. hemşirelik uygulamalarında aydınlatılmış onam. Akdeniz Hemşirelik Dergisi. 2023;2(2): 65-72.
Snipstad ØIM. Concerns regarding the use of the vulnerability concept in research on people with intellectual disability. British Journal of Learning Disabilities. 2022;50(1): 107-114.
Gordon EJ, Prohaska TR. The ethics of withdrawal from study participation. Accountability in Research. 2006;13(4): 285-309. doi: 10.1080/08989620600848645.
Endres S, Evers T, Rothenberger L. On equal terms? Publizistik. 2024;69: 267–297. https://doi.org/10.1007/s11616-024-00856-5
Graham, A., Powell, M. A., & Taylor, N. (2015). Ethical research involving children: encouraging reflexive engagement in research with children and young people. Children & Society, 29(5), 331–343. https://doi.org/10.1111/chso.12089
The Ethical Research Involving Children [ERIC]. International charter for ethical research involving children. 2024. (30.11.2024 tarihinde https://childethics.com/ethical-standards/ adresinden ulaşılmıştır).
Health Research Authority [HRA]. Research involving children. 2024. (25.11.2024 tarihinde https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/research-involving-children/ adresinden ulaşılmıştır).
TRI- Council Policy Statement. Ethical conduct for research involving humans. 2014. (30/11/2024 tarihinde https://publications.gc.ca/collections/collection_2015/ger-pre/RR4-2-2014-eng.pdf adresinden ulaşılmıştır).
Dakić T. No research for the decisionally-impaired mentally ill: a view from Montenegro. BMC Medical Ethics. 2020;21(1): 47. doi: 10.1186/s12910-020-00489-z.
Harris JI, Hanson D, Leskela J, et al. Reconsidering research exclusion for serious mental illness: Ethical principles, current status, and recommendations. Journal of Psychiatric Research. 2021;143: 138–143. https://doi.org/10.1016/j.jpsychires.2021.09.016
Humphreys K, Blodgett JC, Roberts LW. The exclusion of people with psychiatric disorders from medical research. Journal of Psychiatric Research. 2015; 70: 28–32. https://doi.org/10.1016/j.jpsychires.2015.08.005
Altawalbeh SM, Alkhateeb FM, Attarabeen OF. Ethical ıssues in consenting older adults: academic researchers and community perspectives. J Pharm Health Serv Res. 2020;11(1):25-32. doi: 10.1111/jphs.12327.
Cotter G. A guide to published research on refugees, asylum-seekers and immigrants in Ireland. 2004. (15.11.2024 tarihinde https://migrant-integration.ec.europa.eu/library-document/guide-published-research-refugees-asylum-seekers-and-immigrants-ireland_en adresinden ulaşılmıştır).
Jauhiainen JS, Tedeschi M. Undocumented migrants and their everyday lives. (eBook). 2021. (30.11.024 tarihinde https://doi.org/10.1007/978-3-030-68414-3 adresinden ulaşılmıştır).
European Commission Directorate General for Research and Innovation. Guidance note - research on refugees, asylum seekers & migrants. 2021. 16.11.2024 tarihinde https://ec.europa.eu/info/funding-tenders/opportunities/docs/2021-2027/horizon/guidance/guidance-note-research-on-refugees-asylum-seekers-migrants_he_en.pdf adresinden ulaşılmıştır).
Kişisel Verileri Koruma Kurumu (KVKK). 6698 Kişisel Verilerin Korunması Kanunu. Resmî Gazete 2016. (20/11/2024 tarihinde https://www.mevzuat.gov.tr/mevzuat?MevzuatNo=6698&MevzuatTur=1&MevzuatTertip=5 adresinden ulaşılmıştır).
Kişisel Verileri Koruma Kurumu [KVKK]. Kişisel sağlık verilerinin işlenmesi ve mahremiyetinin sağlanması hakkında yönetmelik. Resmî Gazete. 2016. (20/11/2024 tarihinde https://www.resmigazete.gov.tr/eskiler/2016/10/20161020-1.htm adresinden ulaşılmıştır).
Örnek Büken N, Zeybek Ünsal Ç. Kişisel Verilerin Korunması Kanunu’nun biyomedikal alana yansımaları açısından değerlendirilmesi. Hacettepe Hukuk Fakültesi Dergisi. 2017;7(2): 33–54.
Referanslar
Pittaway E, Bartolomei L, Hugman R. ‘Stop stealing our stories’: The ethics of research with vulnerable groups, Journal of Human Rights Practice. 2010;2(2): 229–251. https://doi.org/10.1093/jhuman/huq004
White MG. Why human subjects research protection is important. Ochsner Journal. 2020;20(1): 16-33. doi: 10.31486/toj.20.5012.
Adashi EY, Walters LB, & Menikoff JA. The Belmont Report at 40: Reckoning with time. American Journal of Public Health. 2018; 108(10), 1345–1348. https://doi.org/10.2105/AJPH.2018.304580
Miracle VA. The Belmont Report: The triple crown of research ethics. Dimensions of Critical Care Nursing. 2016;35(4): 223-228. doi: 10.1097/DCC.0000000000000186
Nagai H, Nakazawa E, Akabayashi A. The creation of the Belmont Report and its effect on ethical principles: a historical study. Monash Bioethics Review. 2022;40(2): 157-170. doi: 10.1007/s40592-022-00165-5.
Barrow JM, Brannan GD, & Khandhar PB. Research ethics. In: StatPearls. StatPearls Publishing. 2022.
Davidson N, Hammarberg K, & Fisher J. Ethical considerations in research with people from refugee and asylum seeker backgrounds: a systematic review of national and ınternational ethics guidelines. Bioethical Inquiry. 2024;21: 261-284. https://doi.org/10.1007/s11673-023-10297-w
Gordon BG. Vulnerability in research: basic ethical concepts and general approach to review. Ochsner Journal. 2020;20(1): 34-38. doi: 10.31486/toj.19.0079.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report 1979. (20/11/2024 tarihinde https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html adresinden ulaşılmıştır).
The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report ethical and policy issues in research involving human subjects. 2001. (16/11/2024 tarihinde https://bioethicsarchive.georgetown.edu/nbac/human/oversumm.htmladresinden ulaşılmıştır).
World Medical Associtation [WMA]. Declaration of Helsinki – Ethical principles for medical research involving human participants. 2024. The 75. WMA General Assembly, Helsinki, Finland, October 2024. (30.11.2024 tarihinde https://www.wma.net/policies-post/wma-declaration-of-helsinki/ adresinden ulaşılmıştır).
Jain S, Kuppili PP, Pattanayak RD, et al. Ethics in psychiatric research: Issues and recommendations. Indian Journal of Psychological Medicine. 2017;39(5): 558-565. https://doi.org/10.4103/IJPSYM.IJPSYM_131_17
Açıkgöz PÖ. Küçük ve kısıtlılara yönelik klinik araştırmalarda velayet ve vesayet: Geleneksel derleme. Türkiye Klinikleri Tıp Etiği-Hukuku-Tarihi Dergisi. 2022;30(3): 332-341.
National Library of Medicine. Variolation. History of Medicine at NLM. 2024. (30.11.024 tarihinde https://www.nlm.nih.gov/exhibition/smallpox/sp_variolation.html adresinden ulaşılmıştır).
Türkiye Cumhuriyeti Anayasa Mahkemesi. Türkiye Cumhuriyeti Anayasası. 1982. (16/11/2024 tarihinde https://www.anayasa.gov.tr/tr/mevzuat/anayasa/ adresinden ulaşılmıştır).
Altuntaş Çalım G, Elmas S. hemşirelik uygulamalarında aydınlatılmış onam. Akdeniz Hemşirelik Dergisi. 2023;2(2): 65-72.
Snipstad ØIM. Concerns regarding the use of the vulnerability concept in research on people with intellectual disability. British Journal of Learning Disabilities. 2022;50(1): 107-114.
Gordon EJ, Prohaska TR. The ethics of withdrawal from study participation. Accountability in Research. 2006;13(4): 285-309. doi: 10.1080/08989620600848645.
Endres S, Evers T, Rothenberger L. On equal terms? Publizistik. 2024;69: 267–297. https://doi.org/10.1007/s11616-024-00856-5
Graham, A., Powell, M. A., & Taylor, N. (2015). Ethical research involving children: encouraging reflexive engagement in research with children and young people. Children & Society, 29(5), 331–343. https://doi.org/10.1111/chso.12089
The Ethical Research Involving Children [ERIC]. International charter for ethical research involving children. 2024. (30.11.2024 tarihinde https://childethics.com/ethical-standards/ adresinden ulaşılmıştır).
Health Research Authority [HRA]. Research involving children. 2024. (25.11.2024 tarihinde https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/research-involving-children/ adresinden ulaşılmıştır).
TRI- Council Policy Statement. Ethical conduct for research involving humans. 2014. (30/11/2024 tarihinde https://publications.gc.ca/collections/collection_2015/ger-pre/RR4-2-2014-eng.pdf adresinden ulaşılmıştır).
Dakić T. No research for the decisionally-impaired mentally ill: a view from Montenegro. BMC Medical Ethics. 2020;21(1): 47. doi: 10.1186/s12910-020-00489-z.
Harris JI, Hanson D, Leskela J, et al. Reconsidering research exclusion for serious mental illness: Ethical principles, current status, and recommendations. Journal of Psychiatric Research. 2021;143: 138–143. https://doi.org/10.1016/j.jpsychires.2021.09.016
Humphreys K, Blodgett JC, Roberts LW. The exclusion of people with psychiatric disorders from medical research. Journal of Psychiatric Research. 2015; 70: 28–32. https://doi.org/10.1016/j.jpsychires.2015.08.005
Altawalbeh SM, Alkhateeb FM, Attarabeen OF. Ethical ıssues in consenting older adults: academic researchers and community perspectives. J Pharm Health Serv Res. 2020;11(1):25-32. doi: 10.1111/jphs.12327.
Cotter G. A guide to published research on refugees, asylum-seekers and immigrants in Ireland. 2004. (15.11.2024 tarihinde https://migrant-integration.ec.europa.eu/library-document/guide-published-research-refugees-asylum-seekers-and-immigrants-ireland_en adresinden ulaşılmıştır).
Jauhiainen JS, Tedeschi M. Undocumented migrants and their everyday lives. (eBook). 2021. (30.11.024 tarihinde https://doi.org/10.1007/978-3-030-68414-3 adresinden ulaşılmıştır).
European Commission Directorate General for Research and Innovation. Guidance note - research on refugees, asylum seekers & migrants. 2021. 16.11.2024 tarihinde https://ec.europa.eu/info/funding-tenders/opportunities/docs/2021-2027/horizon/guidance/guidance-note-research-on-refugees-asylum-seekers-migrants_he_en.pdf adresinden ulaşılmıştır).
Kişisel Verileri Koruma Kurumu (KVKK). 6698 Kişisel Verilerin Korunması Kanunu. Resmî Gazete 2016. (20/11/2024 tarihinde https://www.mevzuat.gov.tr/mevzuat?MevzuatNo=6698&MevzuatTur=1&MevzuatTertip=5 adresinden ulaşılmıştır).
Kişisel Verileri Koruma Kurumu [KVKK]. Kişisel sağlık verilerinin işlenmesi ve mahremiyetinin sağlanması hakkında yönetmelik. Resmî Gazete. 2016. (20/11/2024 tarihinde https://www.resmigazete.gov.tr/eskiler/2016/10/20161020-1.htm adresinden ulaşılmıştır).
Örnek Büken N, Zeybek Ünsal Ç. Kişisel Verilerin Korunması Kanunu’nun biyomedikal alana yansımaları açısından değerlendirilmesi. Hacettepe Hukuk Fakültesi Dergisi. 2017;7(2): 33–54.
