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ADLİ GENETİK OLGULARINDA ONAM

Yıl 2023, Cilt: 4 Sayı: 4, 62 - 67, 30.12.2023

Öz

Gerek özel gerekse ceza hukuku bakımından, adli veya tedavi amaçlı örnek alımlarında ilgili kişinin onamı önemlidir. Amaç insan üzerinde deney yapılmasının önlenmesinin ötesinde kişilerin haklarını korumak, onları risk veya zarardan uzak tutmaktır. Adli genetik konusu ile ilgili olarak 5271 sayılı Ceza Muhakemeleri Kanununun 75-77 arası maddelerinde kişilerin beden muayenesi veya örnek alınması, ayrıca 25832 CMK yönetmeliğinde de beden muayenesi ve genetik incelemeler ele alınmıştır. Söz konusu incelemeler ile kişiye yönelik bir risk veya bir zarar söz konusu olmayıp, hedef, genetik prensiplerin kullanımı yolu ile kimliklendirmedir. Bu çerçeveden bakıldığında onam gerekliliği sorgulanabilir. Ancak Kişisel Verilerin Korunması Kanunu’nda genetik verilerin özel nitelikli veriler olduğu ifade edilmektedir. Bu bağlamda kişiye zarar vermeyen ve riskli sayılmayan bu verilerin işlenmesi için kişilerin aydınlatılmış onamını gerektirdiği ortaya çıkmaktadır. Dikkat edilmesi gereken hususlardan biri de söz konusu aydınlatılmış onamların gerçekten “aydınlatan”, anlaşılır, açık ve net olarak kaleme alınması gerekliliğidir. Tüm bunlara ek olarak, alanda kullanılan ve halen geliştirilen yeni teknikler, risk oluşturabilecek nitelik göstermektedir. Tek nokta mutasyonları (SNP) araştırmalarının ile kişilerin fiziksel özellikleri hakkında bilgi edinmek mümkün olmakta, bu da karşılaştırma olmaksızın kişinin görünümü ile ilgili veri sağlar. Ayrıca artık kullanılmaya başlanmış olan moleküler otopside, kişinin fizyolojisi ve metabolik yolları ile ilgili bilgileri açığa çıkabilmektedir. Bu şekilde ölen kişinin aile bireylerinin özel DNA verileri de açığa çıkmış olmakta, genomların paylaşımına dayalı olarak da aile bireyleri riskli konuma gelebilmektedir. Bu durumda konu ile ilgili onamın yeniden düzenlenerek farklılaştırılması söz konusu olacaktır. Ancak henüz uluslararası düzeyde bu konu ile ilgili gelişmeler halen inceleme aşamasındadır. Ülkemizde söz konusu gelişmelerin yakından izlenmesi ve gerekli düzeltmelerin zamanında yapılması konusu gündemde olmalıdır.

Kaynakça

  • 1. Young DR, Hooker DT, Freeberg FE. Informed Consent Documents: Increasing Comprehension by Reducing Reading Level. IRB: Ethics and Human Research. 1990;12(3):1. doi:https://doi.org/10.2307/3564107
  • 2. Ersoy N. Aydınlatılmış Onam Öğretisinin Gelişimi. TKlin Tıbbi Etik; 1995:1-15.
  • 3. Kuner C, Zomignani Barboza J, Jasmontaite L, Marelli M. Handbook on Data Protection in Humanitarian Action - Second Edition. International Committee of the Red Cross; 2020.
  • 4. Budowle B, Sajantila A. Revisiting informed consent in forensic genomics in light of current technologies and the times. International Journal of Legal Medicine. 2023;137(2). doi:https://doi.org/10.1007/s00414-023-02947-w
  • 5. Bazzano LA, Durant J, Brantley PR. A Modern History of Informed Consent and the Role of Key Information. The Ochsner Journal. 2021;21(1):81-85. doi:https://doi.org/10.31486/toj.19.0105
  • 6. Mohr v Williams. 95 Minn 261, 104 NW 12 (1905). Case.law. https://cite. case.law/minn/95/261/
  • 7. Schoendorff v. Society of New York Hosp., 105 N.E. 92, 93 (1914). Lsu.edu. https://biotech.law.lsu.edu/cases/consent/schoendorff.htm
  • 8. Kınlı O, Yeneroğlu E. İnsanlık Suçunun Siyaseten İnşası: Nürnberg ve Mirası. Kebikec: Insan Bilimleri Icin Kaynak Arastirmali Dergisi 48 2019.
  • 9. Salgo v Leland Stanford, Jr University Board of Trustees. 17045(154 Cal App 2d 560, 317 P2d 170 1957).
  • 10. World Medical Association Inc. Declaration of Helsinki. Ethical principles for medical research involving human subjects. Journal of the Indian Medical Association. 2009;107(6):403-405.
  • 11. Department of Health, Education, and Welfare, National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research. The Journal of the American College of Dentists. 2014;81(3):4-13.
  • 12. Gülen M. Tıbbi Müdahalelerde Aydınlatılmış Onam. Türkiye Barolar Birliği Dergisi. 2020;32:187-218.
  • 13. T.C. Resmi Gazete. İnsan Hakları ve Biyotıp Sözleşmesi 2004.
  • 14. Türk Medeni Kanunu https://www.mevzuat.gov.tr/mevzuatmetin/1.5.4721. pdf
  • 15. Turan N, Koç S. Beden Muayenesi ve Aydınlatılmış Onam. Türkiye Klinikleri Tıp Etiği-Hukuku-Tarihi Dergisi. 2011;19(2):114-125.
  • 16. Tapan B, Güven T, Gayef A, Alıcı S, Kalfoğlu EA. Evaluating the Efficiency of the Informed Consent Forms of the Patient Files Which Were Notified of Erroneous Medical Intervention. Br J Med Health Res. 2019;4(11):26-37.
  • 17. Yarborough M. Rescuing Informed Consent: How the new “Key Information” and “Reasonable Person” Provisions in the Revised U.S. Common Rule open the door to long Overdue Informed Consent Disclosure Improvements and why we need to walk Through that door. Science and Engineering Ethics. 2019;26(3):1423-1443. doi:https://doi.org/10.1007/s11948-019-00170-8
  • 18. Sugarman J. Examining Provisions Related to Consent in the Revised Common Rule. The American Journal of Bioethics. 2017;17(7):22-26. doi:https:// doi.org/10.1080/15265161.2017.1329483
  • 19. Kraft SA, Porter KM, Shah SK, Wilfond BS. Comprehension and Choice Under the Revised Common Rule: Improving Informed Consent by Offering Reasons Why Some Enroll in Research and Others Do Not. The American Journal of Bioethics. 2017;17(7):53-55. doi:https://doi.org/10.1080/15265161 .2017.1328535
  • 20. Hekimlik Meslek Etiği Kuralları Türk Tabipler Birliği Yayınları 2012 s. 14-15
  • 21. Help Me Understand Genetics. National Institutes of Health U.S. National Library of Medicine. https://medlineplus.gov/genetics/understanding/
  • 22. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Council of International Organisations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO). https://cioms.ch/wp-content/uploads/2016/08/International_Ethical_ Guidelines_for_Biomedical_Research_Involving_Human_Subjects.pdf
  • 23. Özkan O. T.C. Ankara Üniversitesi Sosyal Bilimler Enstitüsü Özel Hukuk Anabilim Dali Kişisel Verilerin Korunmasi Yüksek Lisans Tezi Ankara - 2020.
  • 24. Kişisel Verilerin Korunması Kanunu: 6698.; 2014. https://www.mevzuat. gov.tr/mevzuatmetin/1.5.6698.pdf
  • 25. Bianchi L, Lio P. Forensic DNA and Bioinformatics. Briefings in Bioinformatics. 2006;8(2):117-128. doi:https://doi.org/10.1093/bib/bbm006
  • 26. Kayser M, Schneider PM. DNA-based prediction of human externally visible characteristics in forensics: Motivations, scientific challenges, and ethical considerations. Forensic Science International: Genetics. 2009;3(3):154-161. doi:https://doi.org/10.1016/j.fsigen.2009.01.012
  • 27. Walsh S, Liu F, Ballantyne KN, van Oven M, Lao O, Kayser M. IrisPlex: a sensitive DNA tool for accurate prediction of blue and brown eye colour in the absence of ancestry information. Forensic Science International Genetics. 2011;5(3):170-180. doi:https://doi.org/10.1016/j.fsigen.2010.02.004
  • 28. Kayser M. Forensic DNA Phenotyping: Predicting human appearance from crime scene material for investigative purposes. Forensic Science International: Genetics. 2015;18:33-48. doi:https://doi.org/10.1016/j.fsigen.2015.02.003
  • 29. Ackerman MJ, Siu BL, Sturner WQ. Postmortem molecular analysis of SCN5A defects in sudden infant death syndrome. ACC Current Journal Review. 2002;11(2):88. doi:https://doi.org/10.1016/s1062- 1458(02)00588-3
  • 30. Fellmann F, van El CG, Charron P, et al. European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death. European Journal of Human Genetics. 2019;27(12):1763- 1773. doi:https://doi.org/10.1038/s41431-019-0445-y
  • 31. Barton DE, Claustres M, Kozich V, et al. Reply to Sajantila and Budowle. European Journal of Human Genetics. 2015;24(3):330-330. doi:https:// doi.org/10.1038/ejhg.2014.290
  • 32. Department of Science and Technology Republic of South Africa, Academy of Science of South Africa. Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications. 2018.

INFORMED CONCENT IN FORENSIC GENETIC CASES

Yıl 2023, Cilt: 4 Sayı: 4, 62 - 67, 30.12.2023

Öz

Informed consent is essential for both private and criminal law cases. The aim is to protect the rights of people and to keep them away from risk or harm. This includes any kind of treatment as well as biological samples taken for investigation. Regarding the forensic genetics, physical examination or taking samples of individuals are mentioned in Articles 75-77 of the Criminal Procedure Law numbered 5271, as well as in the regulation of the same law under the topic of “physical and genetic examinations” in Turkish legislation. These examinations in mention, have no potential risk or harm to the person, the principal goal being identification through the use of genetic principles. From this perspective, the need for consent may be considered unnecessary. However, in the “Turkish Personal Data Protection Law (no 6698), it is stated that genetic data is data of special nature. In this context, it turns out that the informed consent of the people is required for the processing of their genetic data, although the processing itself is not harmful to the person and is not considered risky. One of the points to be considered is that the informed consents in question should be written clearly and in a comprehensive manner, which is not always the case. In addition, the new techniques used and still being developed in the field, create a risk for the subjects. With single point mutation (SNP) studies, it is possible to obtain information about the physical characteristics of individuals, which provides data on the person's appearance. In addition, in the molecular autopsy technique, which is used now for the determination of the cause of death, information about the physiology and metabolic pathways of the person in question can be revealed. In this way, personal DNA data of the family members of the deceased are also exposed. Family members in this case may be considered in risk, once their genome is revealed too. Based on all of the above, the consent forms that are already in use have to be rearranged and differentiated. However the development in this aspect is slow, even in the international level. It should be noted that this fact should be on the agenda in order to closely monitor the developments in question and to make the necessary corrections in a timely manner.

Kaynakça

  • 1. Young DR, Hooker DT, Freeberg FE. Informed Consent Documents: Increasing Comprehension by Reducing Reading Level. IRB: Ethics and Human Research. 1990;12(3):1. doi:https://doi.org/10.2307/3564107
  • 2. Ersoy N. Aydınlatılmış Onam Öğretisinin Gelişimi. TKlin Tıbbi Etik; 1995:1-15.
  • 3. Kuner C, Zomignani Barboza J, Jasmontaite L, Marelli M. Handbook on Data Protection in Humanitarian Action - Second Edition. International Committee of the Red Cross; 2020.
  • 4. Budowle B, Sajantila A. Revisiting informed consent in forensic genomics in light of current technologies and the times. International Journal of Legal Medicine. 2023;137(2). doi:https://doi.org/10.1007/s00414-023-02947-w
  • 5. Bazzano LA, Durant J, Brantley PR. A Modern History of Informed Consent and the Role of Key Information. The Ochsner Journal. 2021;21(1):81-85. doi:https://doi.org/10.31486/toj.19.0105
  • 6. Mohr v Williams. 95 Minn 261, 104 NW 12 (1905). Case.law. https://cite. case.law/minn/95/261/
  • 7. Schoendorff v. Society of New York Hosp., 105 N.E. 92, 93 (1914). Lsu.edu. https://biotech.law.lsu.edu/cases/consent/schoendorff.htm
  • 8. Kınlı O, Yeneroğlu E. İnsanlık Suçunun Siyaseten İnşası: Nürnberg ve Mirası. Kebikec: Insan Bilimleri Icin Kaynak Arastirmali Dergisi 48 2019.
  • 9. Salgo v Leland Stanford, Jr University Board of Trustees. 17045(154 Cal App 2d 560, 317 P2d 170 1957).
  • 10. World Medical Association Inc. Declaration of Helsinki. Ethical principles for medical research involving human subjects. Journal of the Indian Medical Association. 2009;107(6):403-405.
  • 11. Department of Health, Education, and Welfare, National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research. The Journal of the American College of Dentists. 2014;81(3):4-13.
  • 12. Gülen M. Tıbbi Müdahalelerde Aydınlatılmış Onam. Türkiye Barolar Birliği Dergisi. 2020;32:187-218.
  • 13. T.C. Resmi Gazete. İnsan Hakları ve Biyotıp Sözleşmesi 2004.
  • 14. Türk Medeni Kanunu https://www.mevzuat.gov.tr/mevzuatmetin/1.5.4721. pdf
  • 15. Turan N, Koç S. Beden Muayenesi ve Aydınlatılmış Onam. Türkiye Klinikleri Tıp Etiği-Hukuku-Tarihi Dergisi. 2011;19(2):114-125.
  • 16. Tapan B, Güven T, Gayef A, Alıcı S, Kalfoğlu EA. Evaluating the Efficiency of the Informed Consent Forms of the Patient Files Which Were Notified of Erroneous Medical Intervention. Br J Med Health Res. 2019;4(11):26-37.
  • 17. Yarborough M. Rescuing Informed Consent: How the new “Key Information” and “Reasonable Person” Provisions in the Revised U.S. Common Rule open the door to long Overdue Informed Consent Disclosure Improvements and why we need to walk Through that door. Science and Engineering Ethics. 2019;26(3):1423-1443. doi:https://doi.org/10.1007/s11948-019-00170-8
  • 18. Sugarman J. Examining Provisions Related to Consent in the Revised Common Rule. The American Journal of Bioethics. 2017;17(7):22-26. doi:https:// doi.org/10.1080/15265161.2017.1329483
  • 19. Kraft SA, Porter KM, Shah SK, Wilfond BS. Comprehension and Choice Under the Revised Common Rule: Improving Informed Consent by Offering Reasons Why Some Enroll in Research and Others Do Not. The American Journal of Bioethics. 2017;17(7):53-55. doi:https://doi.org/10.1080/15265161 .2017.1328535
  • 20. Hekimlik Meslek Etiği Kuralları Türk Tabipler Birliği Yayınları 2012 s. 14-15
  • 21. Help Me Understand Genetics. National Institutes of Health U.S. National Library of Medicine. https://medlineplus.gov/genetics/understanding/
  • 22. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Council of International Organisations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO). https://cioms.ch/wp-content/uploads/2016/08/International_Ethical_ Guidelines_for_Biomedical_Research_Involving_Human_Subjects.pdf
  • 23. Özkan O. T.C. Ankara Üniversitesi Sosyal Bilimler Enstitüsü Özel Hukuk Anabilim Dali Kişisel Verilerin Korunmasi Yüksek Lisans Tezi Ankara - 2020.
  • 24. Kişisel Verilerin Korunması Kanunu: 6698.; 2014. https://www.mevzuat. gov.tr/mevzuatmetin/1.5.6698.pdf
  • 25. Bianchi L, Lio P. Forensic DNA and Bioinformatics. Briefings in Bioinformatics. 2006;8(2):117-128. doi:https://doi.org/10.1093/bib/bbm006
  • 26. Kayser M, Schneider PM. DNA-based prediction of human externally visible characteristics in forensics: Motivations, scientific challenges, and ethical considerations. Forensic Science International: Genetics. 2009;3(3):154-161. doi:https://doi.org/10.1016/j.fsigen.2009.01.012
  • 27. Walsh S, Liu F, Ballantyne KN, van Oven M, Lao O, Kayser M. IrisPlex: a sensitive DNA tool for accurate prediction of blue and brown eye colour in the absence of ancestry information. Forensic Science International Genetics. 2011;5(3):170-180. doi:https://doi.org/10.1016/j.fsigen.2010.02.004
  • 28. Kayser M. Forensic DNA Phenotyping: Predicting human appearance from crime scene material for investigative purposes. Forensic Science International: Genetics. 2015;18:33-48. doi:https://doi.org/10.1016/j.fsigen.2015.02.003
  • 29. Ackerman MJ, Siu BL, Sturner WQ. Postmortem molecular analysis of SCN5A defects in sudden infant death syndrome. ACC Current Journal Review. 2002;11(2):88. doi:https://doi.org/10.1016/s1062- 1458(02)00588-3
  • 30. Fellmann F, van El CG, Charron P, et al. European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death. European Journal of Human Genetics. 2019;27(12):1763- 1773. doi:https://doi.org/10.1038/s41431-019-0445-y
  • 31. Barton DE, Claustres M, Kozich V, et al. Reply to Sajantila and Budowle. European Journal of Human Genetics. 2015;24(3):330-330. doi:https:// doi.org/10.1038/ejhg.2014.290
  • 32. Department of Science and Technology Republic of South Africa, Academy of Science of South Africa. Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications. 2018.
Toplam 32 adet kaynakça vardır.

Ayrıntılar

Birincil Dil Türkçe
Konular Biyokimya ve Hücre Biyolojisi (Diğer)
Bölüm Derlemeler
Yazarlar

Gavril Petridis 0000-0003-2832-1159

Aykut Taner Güven 0000-0002-0946-9943

Sotirios Kalfoglou 0000-0002-3397-0789

Şeyda Şebnem Özcan 0000-0003-0751-279X

Yayımlanma Tarihi 30 Aralık 2023
Gönderilme Tarihi 31 Mart 2023
Yayımlandığı Sayı Yıl 2023 Cilt: 4 Sayı: 4

Kaynak Göster

AMA Petridis G, Güven AT, Kalfoglou S, Özcan ŞŞ. ADLİ GENETİK OLGULARINDA ONAM. JMS. Aralık 2023;4(4):62-67.