Consanguineous marriages in the genetic counseling centers of Isfahan and the ethical issues of clinical consultations
-
Narges Nouri
,
Nayereh Nouri
,
Samane Tirgar
,
Elham Soleimani
,
Vida Yazdani
,
Farzaneh Zahedi
,
Bagher Larijani
Abstract
Consanguineous marriage, which is common in many regions in the world, has absorbed much attention as a causative factor in raising the incidence of genetic diseases. The adverse effects may be attributed to the expression of the genes received from common ancestors and mortality and morbidity of the offspring. Iran has a high rate of consanguineous marriages. In recent years genetic counseling has come to be considered in health care services. This cross-sectional study was conducted in order to determine the prevalence and types of consanguineous marriages in the genetic clinics in Isfahan. We aimed to define the different types of marriages, specific categories of genetic disorders associated with consanguineous marriages, and mode of inheritance in the family tree. We also narratively reviewed the ethical aspects of the issue.
The data were collected using a simple questionnaire. A total number of 1535 couples from urban and rural areas formed the study population. The marriages were classified according to the degree of the relationship between couples, including: double cousin, first cousin, first cousin once removed, second cousin and beyond second cousin. The SPSS software version 16 was used for data analysis.
Data obtained through genetic counseling offered during a 5-year period revealed that 74.3% had consanguineous relationships, 62.3% were first cousins, 1% were double cousins and 7.8% were second cousins. In addition, 76% of the couples had at least one genetic disease in their family tree. Related ethical issues were also considered in this study, including autonomy and informed decision making, benefit and harm assessment, confidentiality, ethics in research, justice in access to counseling services, financial problems ethics, and the intellectual property of scientific success.
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28. McGillivray G, Rosenfeld JA, McKinlay Gardner RJ, Gillam LH. Genetic counseling and ethical issues with chromosome microarray analysis in prenatal testing. Prenat Diagn. 2012; 32(4): 389-95.
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32. Wilcken B. Ethical issues in genetics. J Paediatr Child Health. 2011; 47(9): 668-71.
33. Fisher CB, Harrington EL. Ethics in prevention science involving genetic testing. Prev Sci. 2013; 14(3):310-8.
34. Lolkema MP, Gadellaa-van Hooijdonk CG, Bredenoord AL, et al. Ethical, legal, and counseling challenges surrounding the return ofgenetic results in oncology. J Clin Oncol. 2013; 31(15):1842-8.
35. Gschmeidler B, Flatscher-Thoeni M. Ethical and professional challenges of genetic counseling - the case of Austria. J Genet Couns. 2013; 22(6): 741-52.
36. Hodgson J, Gaff C. Enhancing family communication about genetics: ethical and professional dilemmas. J Genet Couns. 2013; 22(1):16-21.
37. Harper JC, Geraedts J, Borry P, et al. Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. Hum Reprod. 2014; 29 (8): 1603-9.
38. Melas PA, Georgsson Öhman S, Juth N, Bui TH. Information related to prenatal genetic counseling: interpretation by adolescents, effects on risk perception and ethical implications. J Genet Couns. 2012; 21(4):536-46.
39. McWhirter RE, Mununggirritj D, Marika D, Dickinson JL, Condon JR. Ethical genetic research in Indigenous communities: challenges and successful approaches. Trends Mol Med. 2012; 18(12): 702-8.
40. Muthuswamy V. Ethical issues in genetic counseling with special references to hemoglobinopathies. Indian J Med Res. 2011; 134(4): 547-51.
41. Christenhusz GM, Devriendt K, Dierickx K. Disclosing incidental findings in genetics contexts: a review of the empirical ethical research. Eur J Med Genet. 2013; 56(10):529-40.
42. Trevor S. Ethics in Medical Research. Translated by Larijani B, Zargham M. Tehran: Baray-e-Farda; 2006, p.259.
43. Larijani B, Zahedi F, Asghari F. Ethics in genetic research. IJDLD. 2005; 4(Supplement of Ethics in Clinical Research): 71-82. [in Persian]
44. Andorno R. Biomedicine and international human rights law: in search of a global consensus. http://www.who.int/bulletin/archives/80 (12)959.pdf (Accessed on 2017).
45. Anonymous. International declaration on human genetics. http://portal.unesco.org/en/ev.php-URL_ID=17720&URL_DO=DO_TOPIC&URL_SECTION=201.html (Accessed on 2017).
46. Motevasseli E, Akrami M, Zeinali S, Modaresi MH, Parsapoor A, Aramesh K, et al. A Review of compiling of Ethical Guidelines for Genetic Research in Iran. Journal of Babol University of Medical Sciences 2006; 8(Suppl.3): 49-54. [in Persian]
47. Anonymous. The ethical, legal and social 8implications of pharmacogenomics in developing countries. http://apps.who.int/iris/bitstream/10665/43669/1/9789241595469_eng.pdf (Accessed on 2017).
48. Kieran S, Loescher LJ, Lim KH. The role of financial factors in acceptance of clinical BRCA genetic testing. Genet Test. 2007; 11(1):101-10.
49. Brierley KL, Blouch E, Cogswell W, et al. Adverse events in cancer genetic testing: medical, ethical, legal, and financial implications. Cancer J. 2012; 18(4): 303-9.
50. Fathzadeh M, Babaei Bigi MA, Barzegar M, Yavarian M, Tabatabaee HR, Akrami SM. Genetic counseling in southern Iran: consanguinity and reason for referral. J Genet Couns. 2008; 17: 472-79.
51. Abou Alsoltani F, Rahmani SA, Pourbarghi M, Doulatkhah H, Aghazadeh AM. The frequency of consanguineous marriages and their effects on off springs in Tabriz City. Egyptian Journal of Medical Human Genetics. 2009; 10(2): 198-207.
52. Sadat M, Ansari-lari M, Farhud DD. Consanguineous marriage in Iran. Ann Hum Biol. 2004; 31(2): 263-9.
Medicine journal. 2013; 5: 1-10
2. Hussain R. Bittles AH. The prevalence and demographic characteristics of consanguineous marriages in Pakistan. J Biosoc Sci. 1998; 30: 261-75.
3. Teebi AS (ed). Genetics Disorders among Arab Population, 1th ed. New York: Oxford University Press; 1997.
4. Kushki AM, Zeyghami B. The effect of consanguineous marriages on congenital malformation. J Res Med Sci. 2005; 10(5): 298-301.
5. Bittles AH. Endogamy, consanguinity and community disease profiles. Common Genet. 2005; 8: 17-20.
6. Benett RL, Motulsky AG, Bittles A. Genetic counseling and screening of consanguineous couples and their offspring: recommendations of the national society of genetic counselors. J Genet Counsel. 2002; 11(2): 97-119.
7. Muller RF, Young ID. Emery’s Elements of Medical Genetics, 11th ed. Edinburgh: Churchill Livingston; 2001, p. 100.
8. Modell B, Darr A. Science and society: genetic counseling and customary consanguineous marriage. Nat Rev Genet. 2002; 3: 225-9.
9. Bittles AH. A background summary of consanguineous marriage http://consang.net/images/d/dd/01AHBWeb3.pdf (Accessed on 2017).
10. Shawky RM, Elsayed SM, Zaki ME, Nour El-Din SM, Kamal FM. Consanguinity and its relevance to clinical genetics. Egyptian Journal of Medical Human Genetics. 2013; 14: 157-64.
11. Bittles AH, Mason WM. Greene J, Rao NA. Reproductive behavior and health in consanguineous marriages. Science. 1991; 252: 789-94.
12. Klat M, Khudr A. Cousin marriages in Beirut: is the pattern changing? J Biosoc Sci. 1984; 16:369-73.
13. Hamamy H. Consanguineous marriage in the Middle East: trends, impact on reproductive health and research priorities. https://www.gfmer.ch/SRH-Course-2012/community-genetics/pdf/Consanguineous-marriages-Hamamy-2012.pdf (Accessed on 2017).
14. Hamamy H. Consanguineous Marriages. J community Genet. 2012; 3(3):185-92.
15. Islam MM. The practice of consanguineous marriage in Oman: prevalence, trends and determinants. J Biosoc Sci. 2012; 44(5):571-94.
16. Saadat M, Tajbakhsh K. Prevalence of consanguineous marriages in west and south of Afghanistan. J Biosoc Sci. 2013; 45(6):799-805.
17. Tadmouri GO, Nair P, Obeid T, et al. Consanguinity and reproductive health among Arabs. Reprod Health. 2009; 6: 17.
18. Akrami SM. Consanguineous marriage; genetic counseling, culture and religious aspects. Iranian Journal of Pediatrics. 2006; 16(3): 313-16.
19. Al Aqeel AI. Genetic counseling in the Muslim world: The challenges. http://www.cags.org.ae/e10alaqeel.pdf (Accessed on 2017).
20. AL-Gazali LA, Bener Y, Abdulrazzaq R, Micallef A, Al-khayat,GT, Gaber T. Consanguineous marriage in the United Arab Emirates. J Biosoc Sci. 1997; 29: 491-7.
21. Fadel HE. Strategies to decrease the incidence of genetic disorders in Arab countries. Jima. 2008; 40: 98-103.
22. Rashid Shomali S, Montazeri V, Akrmi SM, Larijani B. Prevalence of Consanguineous Marriages among Patients Referred to Diabetes and Osteoporosis Clinics of Dr Shariati Hospital. Iranian Journal of Diabetes and Metabolism (IJDLD). 2007; 7(1): 85-90
23. Maher R. Consanguinity and its implications for public health in the Arab world. https://prospectjournal.org/2012/03/30/consanguinity-and-its-implications-for-public-health-in-the-arab-world/
(Accessed on 2017).
24. Mohseni BA. Thirty thousand children with disabilities are born annually in Iran. Koodak Magazine. 2015; 115: 23. Available at: http://www.magiran.com/view.asp?Type=pdf&ID=1463514 [in Persian]
25. World Health Organization. Community genetics services: report of a WHO consultation on community genetics in low- and middle-income countries. http://apps.who.int/iris/bitstream/10665/44532/1/9789241501149_eng.pdf (Accessed on 2017).
26. Hawkins AK, Ho A. Genetic counseling and the ethical issues around direct to consumer genetic testing. J Genet Couns. 2012; 21(3):367-73.
27. Fresneau B, Brugières L, Caron O, Moutel G. Ethical issues in presymptomatic genetic testing for minors: a dilemma in Li-Fraumeni syndrome. J Genet Couns. 2013; 22(3): 315-22.
28. McGillivray G, Rosenfeld JA, McKinlay Gardner RJ, Gillam LH. Genetic counseling and ethical issues with chromosome microarray analysis in prenatal testing. Prenat Diagn. 2012; 32(4): 389-95.
29. Bagheri A. BioMedical Ethics in Iran. Bangkok: Eubios Ethics Institute Press; 2014, p. 250.
30. Shoenbill K, Fost N, Tachinardi U, Mendonca EA. Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations. J Am Med Inform Assoc. 2014; 21(1):171-80.
31. Visser MJ, Rhebergen MD, Kezic S, van Dijk FJ, Willems DL, Verberk MM. Ethical issues of genetic susceptibility testing for occupational diseases: opinions of trainees in a high-risk job. Int Arch Occup Environ Health. 2013; 86(7): 827-36.
32. Wilcken B. Ethical issues in genetics. J Paediatr Child Health. 2011; 47(9): 668-71.
33. Fisher CB, Harrington EL. Ethics in prevention science involving genetic testing. Prev Sci. 2013; 14(3):310-8.
34. Lolkema MP, Gadellaa-van Hooijdonk CG, Bredenoord AL, et al. Ethical, legal, and counseling challenges surrounding the return ofgenetic results in oncology. J Clin Oncol. 2013; 31(15):1842-8.
35. Gschmeidler B, Flatscher-Thoeni M. Ethical and professional challenges of genetic counseling - the case of Austria. J Genet Couns. 2013; 22(6): 741-52.
36. Hodgson J, Gaff C. Enhancing family communication about genetics: ethical and professional dilemmas. J Genet Couns. 2013; 22(1):16-21.
37. Harper JC, Geraedts J, Borry P, et al. Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. Hum Reprod. 2014; 29 (8): 1603-9.
38. Melas PA, Georgsson Öhman S, Juth N, Bui TH. Information related to prenatal genetic counseling: interpretation by adolescents, effects on risk perception and ethical implications. J Genet Couns. 2012; 21(4):536-46.
39. McWhirter RE, Mununggirritj D, Marika D, Dickinson JL, Condon JR. Ethical genetic research in Indigenous communities: challenges and successful approaches. Trends Mol Med. 2012; 18(12): 702-8.
40. Muthuswamy V. Ethical issues in genetic counseling with special references to hemoglobinopathies. Indian J Med Res. 2011; 134(4): 547-51.
41. Christenhusz GM, Devriendt K, Dierickx K. Disclosing incidental findings in genetics contexts: a review of the empirical ethical research. Eur J Med Genet. 2013; 56(10):529-40.
42. Trevor S. Ethics in Medical Research. Translated by Larijani B, Zargham M. Tehran: Baray-e-Farda; 2006, p.259.
43. Larijani B, Zahedi F, Asghari F. Ethics in genetic research. IJDLD. 2005; 4(Supplement of Ethics in Clinical Research): 71-82. [in Persian]
44. Andorno R. Biomedicine and international human rights law: in search of a global consensus. http://www.who.int/bulletin/archives/80 (12)959.pdf (Accessed on 2017).
45. Anonymous. International declaration on human genetics. http://portal.unesco.org/en/ev.php-URL_ID=17720&URL_DO=DO_TOPIC&URL_SECTION=201.html (Accessed on 2017).
46. Motevasseli E, Akrami M, Zeinali S, Modaresi MH, Parsapoor A, Aramesh K, et al. A Review of compiling of Ethical Guidelines for Genetic Research in Iran. Journal of Babol University of Medical Sciences 2006; 8(Suppl.3): 49-54. [in Persian]
47. Anonymous. The ethical, legal and social 8implications of pharmacogenomics in developing countries. http://apps.who.int/iris/bitstream/10665/43669/1/9789241595469_eng.pdf (Accessed on 2017).
48. Kieran S, Loescher LJ, Lim KH. The role of financial factors in acceptance of clinical BRCA genetic testing. Genet Test. 2007; 11(1):101-10.
49. Brierley KL, Blouch E, Cogswell W, et al. Adverse events in cancer genetic testing: medical, ethical, legal, and financial implications. Cancer J. 2012; 18(4): 303-9.
50. Fathzadeh M, Babaei Bigi MA, Barzegar M, Yavarian M, Tabatabaee HR, Akrami SM. Genetic counseling in southern Iran: consanguinity and reason for referral. J Genet Couns. 2008; 17: 472-79.
51. Abou Alsoltani F, Rahmani SA, Pourbarghi M, Doulatkhah H, Aghazadeh AM. The frequency of consanguineous marriages and their effects on off springs in Tabriz City. Egyptian Journal of Medical Human Genetics. 2009; 10(2): 198-207.
52. Sadat M, Ansari-lari M, Farhud DD. Consanguineous marriage in Iran. Ann Hum Biol. 2004; 31(2): 263-9.
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| Issue | Vol 10 (2017) | |
| Section | Original Article(s) | |
| Keywords | ||
| Genetic counseling Genetics Consanguineous marriage Medical ethics Iran | ||
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How to Cite
1.
Nouri N, Nouri N, Tirgar S, Soleimani E, Yazdani V, Zahedi F, Larijani B. Consanguineous marriages in the genetic counseling centers of Isfahan and the ethical issues of clinical consultations. J Med Ethics Hist Med. 2017;10.
