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Looking for Ms or Mr Gene Right: Premarital Genetic Screening

Gil Siegal

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Now that it’s possible to identify the cause or susceptibility to some diseases, should couples:

  • Undertake premarital genetic testing?
  • Inform prospective spouses about they are susceptible to a disease that may be transmitted to their children?
  • If there is a risk, take a genetically responsible decision with regard to their future spouse or about having children?

June 2007

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Should you choose a mate based on genetic fitness? Photo: bio.davidson.edu.

Should you consider genetic fitness as a partner?

Should your choice of spouse be left solely to your heart, or should the choice incorporate some genetic fitness phase? Obviously, if one is to regard marriage (or any other equivalent arrangement such as cohabitation) as a joint decision to share your life with someone you love, incorporating genetic criteria might seem rather troubling, if not inappropriate. But, on the other hand, if you hold the view that the main reason for your union is procreation, then worrying about genetic compatibility and avoiding inheritance of grave genetic diseases becomes a serious consideration.

The landscape

Many countries already conduct genetic screening.

Genetic testing and genetic screening have become part of contemporary medicine and public health initiatives. These terms are usually used interchangeably, but the term “testing” denotes a genetic test done on an individual voluntary basis, while “screening” implies large-scale, public health initiatives. Examples of genetic testing in clinical settings include testing for the presence of BRCA1 and BRCA2 genes, to identify increased risk for breast and ovarian cancer, or prenatal genetic testing for Huntington disease. Examples of public health initiatives in screening programs include newborn genetic screening programs instituted in all states in the United States (these panels of tests range among states from 6 to 50 diseases) and in other developed countries.1,2

The impetus to identifying the genetic cause of a disease or a susceptibility implies, or should imply, the ability to act upon this knowledge:

  • providing timely treatment
  • avoiding exposure to environmental risks
  • influencing reproductive choices
Screening should be restricted to lethal or severely debilitating diseases.

Importantly, we are not dealing here with genetic enhancement but rather avoiding the birth of babies with lethal or severely debilitating diseases.

Gil Siegal, LLB, MD, is director of the Center for Health Law and Bioethics at Ono Academic College in Israel and a senior researcher at the Gertner Institute for Health Policy. He serves as an adjunct lecturer at Hebrew University and Bar-Ilan University law schools. During 2003 and 2004, Siegal was a fellow in health policy and ethics at the University of Virginia School of Law, where he also taught comparative health law, and in 2004 and 2005 he served as a fellow in medical ethics at Harvard University Medical School. Siegal’s scholarly interests include health law, genetics and biotechnology, organ transplantation, and bioethics.
http://www.law.virginia.edu/lawweb/Faculty.nsf/PrFHPbW/gs6x
email: gil.siegal@ono.ac.il

Looking for Ms or Mr Gene Right: Premarital Genetic Screening

Dor Yeshorim and Thalassaemia

The Dor Yeshorim program focusing on the ‘genetic compatibility’ of prospective couples in Orthodox Jewish communities in Europe, the US and Israel. It is compared to the premarital genetic testing programme for thalassaemia in Cyprus.
http://www.journals.cambridge.org/production/action/cjoGetFulltext?fulltextid=413139

About Thalassemia and Treatment

About Genetic Testing in General

A Genomics Site for Public Health

This site provides updated information on how human genomic discoveries can be used to improve health & prevent disease. It also provides links to CDC wide activities in public health genomics.
http://www.cdc.gov/genomics/

Thalassemia international support groups

List of support groups by country for families dealing with this heritable blood disease.
http://www.thalassemia.com/inter_support.html

Genetic Counseling Foundation (US)

Find a genetic counselor near you in the U.S.
http://www.nsgc.org/FindaGeneticCounselor/tabid/64/Default.aspx

Resources for Primary Care Teaching

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Teaching Resources from the Northwest Association for Biomedical Research (NWABR)

The Northwest Association for Biomedical Research (NWABR) strengthens public trust in research through education and dialogue. Its diverse membership spans academic, industry, non-profit research institutes, health care, and voluntary health organizations. Through membership and extensive education programs, it fosters a shared commitment to the ethical conduct of research and ensures the vitality of the life sciences community.

Ethics Primer
The Ethics Primer provides engaging, interactive, and classroom-friendly lesson ideas for integrating ethical issues into a science classroom. It also provides basic background on ethics as a discipline, with straightforward descriptions of major ethical theories. Several decision-making frameworks are included to help students apply reasoned analysis to ethical issues.
http://www.nwabr.org/curriculum/ethics-primer
Bioethics 101
Bioethics 101 provides a systematic, five-lesson introductory course to support educators in incorporating bioethics into the classroom through the use of sequential, day-to-day lesson plans. This curriculum is designed to help science teachers in guiding their students to analyze issues using scientific facts, ethical principles, and reasoned judgment.
http://www.nwabr.org/curriculum/bioethics-101
Introductory Bioinformatics: Genetic Testing
The curriculum unit explores how bioinformatics is applied to genetic testing. Students are also introduced to principles-based bioethics in order to support their thoughtful consideration of the many social and ethical implications of genetic testing. Throughout the unit, students are presented with a number of career options in which the tools of bioinformatics are used.
http://www.nwabr.org/curriculum/introductory-bioinformatics-genetic-testing

Resources for Biology Teachers

Bioethics 101

This systematic, five-lesson introductory course supports educators in incorporating bioethics into the classroom. Designed to help science teachers in guiding their students to analyze issues using scientific facts, ethical principles, and a reasoned judgment.
http://www.nwabr.org/curriculum/bioethics-101

  1. N.S. Green, et al. 2006. Newborn screening: Complexities in universal genetic testing. Am J Public Health 96: 1955-59.
  2. Nuffield Council on Bioethics. 2006. Genetic screening: A supplement to the 1993 report by the Nuffield Council on Bioethics. http://www.nuffieldbioethics.org/fileLibrary/pdf/GeneticScreening-aSupplementtothe1993Report_(2006).pdf (accessed Jun. 14, 2007) 9/13/2010 Link no longer available.
  3. Ekstein, J., and H. Katzenstein. 2001. The Dor Yeshorim story: Community-based carrier screening for Tay-Sachs disease. Advances in Genetics 44: 297-310.
  4. Barlow-Stewart, K, L. Burnett, A. Proos, V. Howell, F. Huq, R. Lazarus, and H. Aizenberg. 2003. A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students. J Med Genet 40:e45. http://www.jmedgenet.com/cgi/content/full/40/4/e45 (accessed Jun. 14, 2007)
  5. Barilan, Y.M., and G. Siegal. 2005. The stem cell debate: A Jewish perspective on human dignity, human creativity and inter-religious dialogues. In W. Bender, C. Hauskeller, A. Manzei (eds). Crossing Borders: Cultural, Political and Religious Differences Concerning Stem Cell Research. Münster, Germany: Agenda Verlag.
  6. Prainsack, B., and G. Siegal. 2006. The rise of genetic couplehood? A comparative view of premarital genetic screening. BioSocieties 1: 17-36.
  7. Samavat, A., and B. Modell. 2004. Iranian national thalassemia screening programme. British Medical Journal 329: 1134-1137.
  8. Najmabadi, H., et al. 2006. Fourteen-year experience of prenatal diagnosis of thalassemia in Iran. Community Genetics 9: 93-97.
  9. Weatherall, D.J., and J.B. Clegg. 1996. Thalassemia: A global public health problem. Nature Medicine 2(8): 847-849.
  10. Cao, A., M.C. Rosatelli, G. Monni, and R. Alanello. 2002. Screening of thalassemia: A model of success. Obstetrics and Gynecology Clinics of North America 29: 305-328.

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