Genomic Databases and Biobanks in Israel

Zlotogora J. , “Genetics and Genomic Medicine in Israel,” Molecular Genetics & Genomic Medicine 2, no. 2 (2014): 85–94.

Basic Law Human Dignity and Freedom, 1991; Patient's Rights Act, 1996.

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Israel's Research and Development Outputs: Scientific Publications - International Comparison 1990–2011 , Samual Na'aman Institute (2013), at 14 [in Hebrew], available at <http://most.gov.il/Molmop/Reports/Documents/publications%20review.pdf> [in Hebrew] (last visited November 10, 2015).

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Siegal G. , ed., Israeli Bioethics (Jerusalem; Bialik Publishing House 2015): 28–30 [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.

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Zlotogora , supra note 1.

Shifman S. “Highly Significant Association between a COMT Haplotype and Schizophreni,” American Journal of Human Genetics 71, no. 6 (2002): 1296–1302.

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.

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).

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).

Henderson G. E. , “Stewardship Practices of U.S. Biobanks,” Science Translational Medicine 5, no. 215 (2013): 1–5; 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.

Creation and Governance of Human Genetic Research Databases – OECD, available at <http://www.oecd.org/science/biotech/37647338.pdf> (last visited November 3, 2015).

Henderson , supra note 19.

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.

Cohen Y. , “Establishing and Sustaining a Biorepository Network in Israel: Challenges and Progress,” Biobanking in Emerging Countries 11, no. 6 (2013): 331–338.

Prainsack B. Siegal G. , “The Rise of Genetic Couplehood? Comparative View of Premarital Genetic Screening,” BioSocieties 1, no. 1 (2006): 17–36.

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.

Green N. S. , “Newborn Screening: Complexities in Universal Genetic Testing,” American Journal of Public Health 96, no. 11 (2006): 1955–1959: “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).

Rothstein M. A. , “Genetic Exceptionalism and Legislative Pragmatism,” Hastings Center Report 35, no. 4 (2005): 27–33.

Roche P. A. Annas G. J. , “Protecting Genetic Privacy,” Nature Genetics 2, no. 5 (2001): 392.

Andrews L. Mehlman M. Rothstein M. , Genetics: Ethics, Law and Policy, 4th ed. (Minnesota: West Academic Publishing, 2015): At 84.

Greely H. T. , “The Control of Genetic Research: Involving the ‘Groups Between,”’ Houston Law Review 33, no. 5 (1997): 1397–1430. In contrast, the famous Belmont Report is devoid of any reference to parties to be protected except for the individual participating in the research.

Basic Law: Human Dignity and Liberty, 1992 (Isr.) Article 7(a).

See Whitman J. Q. , “The Two Western Cultures of Privacy: Dignity Versus Liberty,” Yale Law Journal 113, no. 6 (2004): 1151–1214.

Privacy Protection Act, 5741–1981, 1011 LSI 128 (1980–81) (Isr.)

Gavison R. , “Should We Have a General Right to Privacy in Israel,” Israel Law Review 12, no. 1 (1977): 155–198; 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.

EUR-Lex, “Document 32011D0061,” available at <http://eur-lex.europa.eu/legal-content/EN/TXT/?qid=1415701992276&uri=CELEX:32011D0061> (last visited November 4, 2015).

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).

Michigan Public Health Code Act 368 of 1978, available at <http://www.legislature.mi.gov/(S(bc2lx3ecfppd5pj2ffmsyxtz))/mileg.aspx?page=getObject&objectname=mcl-333-5431> (last visited November 10, 2015).

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).

Siegal G. Siegal N. Bonnie R. J. , “An Account of Collective Actions in Public Health,” American Journal of Public Health 99, no. 9 (2009): 1583–1587.