To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes
Using genetic tests on deceased patients’ samples for diagnostic purposes affects the family members' health and lives but raises some ethical issues in today’s practice of medicine and research. In this paper, we address a common ethical dilemma of clinicians regarding whether to perform gene...
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| Format: | Article |
| Language: | English |
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Tehran University of Medical Sciences
2022-12-01
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| Series: | Journal of Medical Ethics and History of Medicine |
| Subjects: | |
| Online Access: | https://jmehm.tums.ac.ir/index.php/jmehm/article/view/1255 |
| _version_ | 1797943753332228096 |
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| author | Mahshad Noroozi Fatemeh Bahmani Kazem Mousavizadeh Saeedeh Saeedi Tehrani Akram Hashemi Mina Forouzandeh |
| author_facet | Mahshad Noroozi Fatemeh Bahmani Kazem Mousavizadeh Saeedeh Saeedi Tehrani Akram Hashemi Mina Forouzandeh |
| author_sort | Mahshad Noroozi |
| collection | DOAJ |
| description |
Using genetic tests on deceased patients’ samples for diagnostic purposes affects the family members' health and lives but raises some ethical issues in today’s practice of medicine and research. In this paper, we address a common ethical dilemma of clinicians regarding whether to perform genetic tests on a deceased patient’s sample upon a request from first-degree relatives against the patient's wishes in the last days of life. In this paper, a real case scenario is presented that echoes the above-mentioned ethical challenge. Reviewing the genetic basis of the case, the ethical arguments for and against the reuse of genetic material in a clinical context are discussed. An ethico-legal analysis of the case is proposed based on Islamic medical ethics resources. As reusing stored samples of expired patients without their consent also challenges the researchers in the field of genetics, a debate is included on the post-mortem use of genetic data and samples for research.Finally, defining the special features of the presented case and positive benefit-risk ratio, it is concluded that reusing the patient's sample may be justified if the first-degree family members insist on genetic testing and are comprehensively informed about the benefits and harms.
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| first_indexed | 2024-04-10T20:29:10Z |
| format | Article |
| id | doaj.art-ffd53a13e3f04bb4b069e10c967e052a |
| institution | Directory Open Access Journal |
| issn | 2008-0387 |
| language | English |
| last_indexed | 2024-04-10T20:29:10Z |
| publishDate | 2022-12-01 |
| publisher | Tehran University of Medical Sciences |
| record_format | Article |
| series | Journal of Medical Ethics and History of Medicine |
| spelling | doaj.art-ffd53a13e3f04bb4b069e10c967e052a2023-01-25T07:52:24ZengTehran University of Medical SciencesJournal of Medical Ethics and History of Medicine2008-03872022-12-011510.18502/jmehm.v15i13.11569To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposesMahshad Noroozi0Fatemeh Bahmani1Kazem Mousavizadeh2Saeedeh Saeedi Tehrani3Akram Hashemi4Mina Forouzandeh5Assistant Professor, Medical Ethics Department, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.Assistant Professor, Medical Ethics Department, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.Professor, Department of Pharmacology, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.Assistant Professor, Medical Ethics Department, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.Assistant Professor, Medical Ethics Department, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.Assistant Professor, Medical Ethics Department, School of Medicine, Iran University of Medical Sciences, Tehran, Iran. Using genetic tests on deceased patients’ samples for diagnostic purposes affects the family members' health and lives but raises some ethical issues in today’s practice of medicine and research. In this paper, we address a common ethical dilemma of clinicians regarding whether to perform genetic tests on a deceased patient’s sample upon a request from first-degree relatives against the patient's wishes in the last days of life. In this paper, a real case scenario is presented that echoes the above-mentioned ethical challenge. Reviewing the genetic basis of the case, the ethical arguments for and against the reuse of genetic material in a clinical context are discussed. An ethico-legal analysis of the case is proposed based on Islamic medical ethics resources. As reusing stored samples of expired patients without their consent also challenges the researchers in the field of genetics, a debate is included on the post-mortem use of genetic data and samples for research.Finally, defining the special features of the presented case and positive benefit-risk ratio, it is concluded that reusing the patient's sample may be justified if the first-degree family members insist on genetic testing and are comprehensively informed about the benefits and harms. https://jmehm.tums.ac.ir/index.php/jmehm/article/view/1255Genetic information; Postmortem disclosure; Ethics; Family members; Confidentiality; Consent. |
| spellingShingle | Mahshad Noroozi Fatemeh Bahmani Kazem Mousavizadeh Saeedeh Saeedi Tehrani Akram Hashemi Mina Forouzandeh To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes Journal of Medical Ethics and History of Medicine Genetic information; Postmortem disclosure; Ethics; Family members; Confidentiality; Consent. |
| title | To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes |
| title_full | To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes |
| title_fullStr | To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes |
| title_full_unstemmed | To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes |
| title_short | To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes |
| title_sort | to use or not to use an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes |
| topic | Genetic information; Postmortem disclosure; Ethics; Family members; Confidentiality; Consent. |
| url | https://jmehm.tums.ac.ir/index.php/jmehm/article/view/1255 |
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