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Genomic Databases and Biobanks in Israel

Published online by Cambridge University Press:  01 January 2021

Extract

In addressing the creation and regulation of biobanks in different countries, a short descriptive introduction to the social and cultural backgrounds of each country is mandatory. The State of Israel is relatively young (established in 1948), and can be characterized as a multi-religious (Jewish, Muslim, Christian, Druz, and others), multi-ethnic (more than 14), multi-cultural (Western “Ashkenazi” Jewry, Oriental “Sfaradi” Jewry, Soviet Jewry, Israeli Arabs, Palestinian Arabs) society, somewhat similar to the American melting pot. The current population is 8.3 million, a sharp rise resulting from a 1.2 million influx of immigrants from the former Soviet Union in the 1990s. Seventyfive percent are Jewish, 20% Arabs (the majority of whom are Muslims), and several other minorities. The birth rate is 3.8 per family, the highest in the Organization for Economic Cooperation and Development (OECD).

Type
Symposium
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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References

Zlotogora, J., “Genetics and Genomic Medicine in Israel,” Molecular Genetics & Genomic Medicine 2, no. 2 (2014): 8594.Google Scholar
Basic Law Human Dignity and Freedom, 1991; Patient's Rights Act, 1996.Google Scholar
The World Health Report 2000 - Health Systems: Improving Performance, available at <http://www.who.int/whr/2000/en/whr00_en.pdf> (last visited November 3, 2015).+(last+visited+November+3,+2015).>Google Scholar
JBloomberg, “Most Efficient Health Care 2014,” available at <http://www.bloomberg.com/visual-data/best-and-worst//most-efficient-health-care-2014-countries> (last visited November 3, 2015).+(last+visited+November+3,+2015).>Google Scholar
OECD, “Gross domestic spending on R&D,” available at <https://data.oecd.org/rd/gross-domestic-spending-on-r-d.htm#indicator-chart> (last visited November 10, 2015).+(last+visited+November+10,+2015).>Google Scholar
OECD, Country Note: Israel, available at <http://www.oecd.org/edu/Israel_EAG2013%20Country%20Note.pdf> (last visited November 3, 2015).+(last+visited+November+3,+2015).>Google Scholar
WIPO, “Patent Cooperation Treaty Yearly Review,” at 30, available at <http://www.wipo.int/edocs/pubdocs/en/patents/901/wipo_pub_901_2014.pdf> (last visited November 3, 2015).+(last+visited+November+3,+2015).>Google Scholar
National Academy of Sciences, 2013 Report [in Hebrew] (on file with Author).Google Scholar
Siegal, G., ed., Israeli Bioethics (Jerusalem; Bialik Publishing House 2015): 2830 [in Hebrew]; Gross, M. L. Ravitsky, V., “Israel: Bioethics in a Jewish-Democratic State,” Cambridge Quarterly of Healthcare Ethics 12, no. 3 (2003): 247–255.Google Scholar
Barilan, Y. M. Siegal, G., “The Stem Cell Debate: A Jewish Perspective on Human Dignity, Human Creativity and Inter-religious Dialogues,” in Bender, W. Hauskeller, C. Manzei, A., eds., Crossing Borders: Cultural, Political and Religious Differences Concerning Stem Cell Research (Münster: Agenda Verlag 2005): At 231–259.Google Scholar
Zlotogora, , supra note 1.Google Scholar
Shifman, S. et al. “Highly Significant Association between a COMT Haplotype and Schizophreni,” American Journal of Human Genetics 71, no. 6 (2002): 12961302.Google Scholar
The lack of authority was later introduced in the Law on the Prohibition of Genetic Intervention Act (Human Cloning and Genetic Manipulation of Reproductive Cells), (1999, renewed 2004), giving the NCRH authority to survey, investigate allegation and sanction violators of prohibited genetic interventions such as attempted human cloning.Google Scholar
Compare with Washington University v. Catalona, 490 F.3d 667 (8th Cir. 2007), cert. denied, 522 U.S. 1166 (2008); Greenberg v. Miami Children's Hospital Research Institute, 264 F. Supp. 2d 1064 (S.D. Fla. 2003).Google Scholar
Report of the Bioethics Advisory Committee of the Israel Academy of Sciences and Humanities Population-Based Large-Scale Collections of DNA Samples and Databases of Genetic Information, available at <http://bioethics.academy.ac.il/english/PDF/Finalized_Dna_Bank_Full.pdf> (last visited November 3, 2015).+(last+visited+November+3,+2015).>Google Scholar
Henderson, G. E. et al. , “Stewardship Practices of U.S. Biobanks,” Science Translational Medicine 5, no. 215 (2013): 15; Winickoff, D. E. Winickoff, R. N., “The Charitable Trust as a Model for Genomic Biobanks,” New England Journal of Medicine 349, no. 12 (2003): 1180–1184.CrossRefGoogle Scholar
Creation and Governance of Human Genetic Research Databases – OECD, available at <http://www.oecd.org/science/biotech/37647338.pdf> (last visited November 3, 2015).+(last+visited+November+3,+2015).>Google Scholar
Henderson, et al. , supra note 19.Google Scholar
Washington University v. Catalona, 490 F.3d 667 (8th Cir. 2007), cert. denied, 522 U.S. 1166 (2008) (granting Washington University ownership over a prostate cancer biobank). The court's reasoning was based on a fear of the detrimental effect on scientific progress that might result from acknowledging individuals' property rights in their cells/tissues.Google Scholar
Cohen, Y. et al. , “Establishing and Sustaining a Biorepository Network in Israel: Challenges and Progress,” Biobanking in Emerging Countries 11, no. 6 (2013): 331338.Google Scholar
Prainsack, B. Siegal, G., “The Rise of Genetic Couplehood? Comparative View of Premarital Genetic Screening,” BioSocieties 1, no. 1 (2006): 1736.CrossRefGoogle Scholar
Tay-Sachs disease, cystic fibrosis, Gaucher's disease type I, Canavan disease, familial dysautonomia, Bloom syndrome, Fanconi's anaemia, glycogen storage disease type 1A, mucolipidosis type IV, and Niemann-Pick disease type A.Google Scholar
Green, N. S. et al. , “Newborn Screening: Complexities in Universal Genetic Testing,” American Journal of Public Health 96, no. 11 (2006): 19551959: “Screening by DNA mutation analysis for CF and other disorders also reveals unaffected genetic carriers who are at risk of having children with CF if they pair with another carrier. Although carrier reporting is appropriately less urgent, some state programs do not even report the identification of carriers detected through NBS. Programs must responsibly convey the genetic information derived from screening, including carrier identification, so that the implications of this information can be responsibly communicated by the medical providers to the parents of these children.” See also Nuffield Council on Bioethics, Genetic Screening (Supplement): Ethical Issues (2006): 19–20, available at <http://nuffieldbioethics.org/wp-content/uploads/Genetic-Screening-a-Supplement-to-the-1993-Report-20061.pdf> (last visited November 10, 2015).CrossRefGoogle Scholar
Rothstein, M. A., “Genetic Exceptionalism and Legislative Pragmatism,” Hastings Center Report 35, no. 4 (2005): 2733.Google Scholar
Roche, P. A. Annas, G. J., “Protecting Genetic Privacy,” Nature Genetics 2, no. 5 (2001): 392.CrossRefGoogle Scholar
Andrews, L. Mehlman, M. Rothstein, M., Genetics: Ethics, Law and Policy, 4th ed. (Minnesota: West Academic Publishing, 2015): At 84.Google Scholar
Greely, H. T., “The Control of Genetic Research: Involving the ‘Groups Between,”’ Houston Law Review 33, no. 5 (1997): 13971430. In contrast, the famous Belmont Report is devoid of any reference to parties to be protected except for the individual participating in the research.Google Scholar
Basic Law: Human Dignity and Liberty, 1992 (Isr.) Article 7(a).Google Scholar
See Whitman, J. Q., “The Two Western Cultures of Privacy: Dignity Versus Liberty,” Yale Law Journal 113, no. 6 (2004): 11511214.Google Scholar
Privacy Protection Act, 5741–1981, 1011 LSI 128 (1980–81) (Isr.)Google Scholar
Gavison, R., “Should We Have a General Right to Privacy in Israel,” Israel Law Review 12, no. 1 (1977): 155198; Gross, E., “Struggle of a Democracy against Terrorism - Protection of Human Rights: The Right to Privacy versus the National Interest - the Proper Balance,” Cornell International Law Journal 37, no. 1 (2004): 27–96.CrossRefGoogle Scholar
OECD Guidelines on Human Biobanks and Genetic Research Databases (2009), available at <http://www.oecd.org/science/biotech/44054609.pdf> (last visited November 4, 2015).+(last+visited+November+4,+2015).>Google Scholar
MNB, Studies That Use Samples from the Michigan Neonatal Biobank, available at <http://www.mnbb.org/researchers/Research_That_Uses_Michigan_DBS_05302014.pdf> (last visited November 4, 2015).+(last+visited+November+4,+2015).>Google Scholar
Siegal, G. Siegal, N. Bonnie, R. J., “An Account of Collective Actions in Public Health,” American Journal of Public Health 99, no. 9 (2009): 15831587.CrossRefGoogle Scholar