Hostname: page-component-848d4c4894-hfldf Total loading time: 0 Render date: 2024-05-26T02:35:42.768Z Has data issue: false hasContentIssue false

Ethical Issues in Secondary Uses of Human Biological Materials from Mass Disasters

Published online by Cambridge University Press:  01 January 2021

Extract

In the trauma surrounding mass disasters, the need to identify victims accurately and as soon as possible is critical. DNA identification testing is increasingly used to identify human bodies and remains where the deceased cannot be identified by traditional means. This form of testing compares DNA taken from the body of the deceased with DNA taken from their personal items (e.g. hairbrush, toothbrush etc.) or from close biological relatives. DNA identification testing was used to identify the victims of the terrorist attack on the World Trade Center in New York on September 11, 2001, and of the victims of the Tsunami that hit Asia on December 26, 2004. Shortly after the 9/11 attack, police investigators asked the victims' families for personal items belonging to the missing, and for DNA samples from family members themselves. The New York medical examiner's office coordinated the DNA identification testing program; however, some of the identification work was contracted out to private laboratories.

Type
Symposium
Copyright
Copyright © American Society of Law, Medicine and Ethics 2006

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Australian Law Reform Commission (2003), ALRC 96: Essentially Yours: The Protection of Human Genetic Information in Australia, 42.1, Sydney, March 14, 2003, at <http://www.austlii.edu.au/au/other/alrc/publications/reports/96/> (last visited February 20, 2006); See also Ladika, S., “DNA Helps Identify Missing in the Tsunami Zone,” Science 307 (2005): 504; See also Cash, H. D. Hoyle, J. W. Sutton, A. J., “Development Under Extreme Conditions: Forensic Bioinformatics in the Wake of the World Trade Centre Disaster,” Pac Symp Biocomput 8 (2003): 638.Google Scholar
Altman, L., “Now, Doctors Must Identify the Dead among the Trade Center Rubble,” The New York Times, September 25, 2001; Chen, D., “Grim Scavenger Hunt for DNA Drags on for September 11 Families” The New York Times, February 9, 2002; Lawler, A., “Terrorism: Massive DNA Identification Effort Gets Underway,” Science 294 (2001): 278.Google Scholar
Lawler, A., “Terrorism: Massive DNA Identification Effort Gets Underway,” Science 294, no. 5541 (2001): at 278. Laboratories to whom identification work was contracted out following September 11, 2001: Bode Technology Group, Myriad Genetics, Orchid/CellMark, Celera Corporation.CrossRefGoogle Scholar
Edwards, S., “DNA Hunt Abandoned for 9/11 Victims,” Ottawa Citizen, February 24, 2005, at A13.Google Scholar
Marshall, A., “How to ID the Bodies,” Time Magazine 165 (2005): 2021, at 20; See also “Tsunami Zone,” supra note 1.Google Scholar
See in particular, Staley, K., “The Police National DNA Database: Balancing Crime Detection, Human Rights and Privacy,” January 2005, at 47, at <http://www.genewatch.org/HumanGen/Publications/Reports/NationalDNADatabase.pdf> (last visited February 7, 2006). “We believe the following existing practices raise serious concerns:…using the [forensic UK National DNA Database] for genetic research without consent.”CrossRef+(last+visited+February+7,+2006).+“We+believe+the+following+existing+practices+raise+serious+concerns:…using+the+[forensic+UK+National+DNA+Database]+for+genetic+research+without+consent.”>Google Scholar
Essentially Yours, supra note 1, 39.9.Google Scholar
FBI website, CODIS Homepage, at <http://www.fbi.gov/hq/lab/codis/index1.htm> (last visited February 7, 2006).+(last+visited+February+7,+2006).>Google Scholar
Royal Canadian Mounted Police, Safety and Security for Canadians, at <http://www.rcmp.ca/security/index_e.htm> (last visited February 7, 2006).+(last+visited+February+7,+2006).>Google Scholar
Knoppers, B. M. and Saginur, M., “The Babel of Genetic Data Terminology,” Nature Biotechnology 8 (2005): 925927; See also, for example, National Bioethics Advisory Committee, Research involving Human Biological Materials: Ethical Issues and Policy Guidance, August 1999, at 18, table 2.2. Available at <http://www.georgetown.edu/research/nrcbl/nbac/hbm.pdf> (last visited February 7, 2006).CrossRefGoogle Scholar
Sections A and B of Part I build on Knoppers, B. M. and Sallée, C., “Ethical Aspects of Genome Research and Banking,” in Sensen, C. W., ed., Handbook of Genome Research: Genomics, Proteomics, Metabolomics, Bioinformatics, Ethical and Legal Issues, volume 2 (Boschstarfe: Wiley-VCH, 2005).Google Scholar
World Health Organization (European Partnership on Patients' Rights and Citizens' Empowerment), Genetic Databases – Assessing the Benefits and the Impact on Human Rights and Patient Rights, Geneva, 2003, available at <http://www.law.ed.ac.uk/ahrb/publications/online/whofinalreport.rtf> (last visited February 7, 2006) Section 4.4, at 14.+(last+visited+February+7,+2006)+Section+4.4,+at+14.>Google Scholar
Human Genome Organization, Statement on DNA Sampling: Control and Access, at <http://www.gene.ucl.ac.uk/hugo/sampling.html> (last visited February 7, 2006).+(last+visited+February+7,+2006).>Google Scholar
Council for International Organizations of Medical Sciences, International Ethical Guidelines for Biomedical Research Involving Human Subjects, Geneva, November 2002, official CIOMS website, at <http://www.cioms.ch/frame_guidelines_nov_2002.htm> (last visited February 7, 2006).+(last+visited+February+7,+2006).>Google Scholar
United Nations Educational, Scientific and Cultural Organization (UNESCO), International Declaration on Human Genetic Data, Geneva, October 16, 2003, available at <http://portal.unesco.org/shs/en/file_download.php/6016a4bea4c293a23e913de638045ea9Declaration_en.pdf> (last visited February 7, 2006).+(last+visited+February+7,+2006).>Google Scholar
HUGO DNA Sampling, supra note 15, rec. 2.Google Scholar
CIOMS, supra note 16, guideline 4.Google Scholar
CIOMS, supra note 16, commentary under guideline 4.Google Scholar
CIOMS, supra note 16, guideline 18.Google Scholar
CIOMS, supra note 16, guideline 8.Google Scholar
UNESCO Genetic Data, supra note 17, article 16.Google Scholar
UNESCO Genetic Data, supra note 17, article 16(b).Google Scholar
UNESCO Genetic Data, supra note 17, article 16(a).Google Scholar
See, e.g., HUGO DNA Sampling, supra note 15, rec. 3; UNESCO Genetic Data, supra note 17, article 16.Google Scholar
CIOMS, supra note 16, commentary on guideline 4.Google Scholar
CIOMS, supra note 16, commentary on guideline 4; see also for genetic databases, WHO Genetic Databases, supra note 14, rec. 6.Google Scholar
CIOMS, supra note 16, guideline 4, and commentaries.Google Scholar
UNESCO Genetic Data, supra note 17, article 16.Google Scholar
UNESCO Genetic Data, supra note 17, article 17.Google Scholar
UNESCO Genetic Data, supra note 17, article 14(e).Google Scholar
WHO Genetic Databases, supra note 14, rec. 4.2 and 7.Google Scholar
Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine, Oviedo, April 4, 1997 available at <http://conventions.coe.int/treaty/en/treaties/html/164.htm> (last visited February 7, 2006).+(last+visited+February+7,+2006).>Google Scholar
European Society of Human Genetics (2001), Data Storage and DNA Banking for Biomedical Research: Technical, Social and Ethical Issues, Birmingham, November 2001, official site of the ESHG, at <http://www.eshg.org/ESHGDNAbankingrec.pdf> (last visited February 7, 2006).+(last+visited+February+7,+2006).>Google Scholar
Council of Europe (Steering Committee on Bioethics) (2002), Proposal for an Instrument on the Use of Archived Human Biological Materials in Biomedical Research, Strasbourg, October 17, 2002, at <http://www.coe.int/T/E/Legal_affairs/Legal_cooperation/Bioethics/Activities/Biomedical_research/CDBI-INF(2002)5E.pdf> (last visited February 20, 2006).+(last+visited+February+20,+2006).>Google Scholar
European Commission, 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing, Brussels, 2004, available at <http://europa.eu.int/comm/research/conferences/2004/genetic/pdf/recommendations_en.pdf> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
ESHG, supra note 35.Google Scholar
ESHG, supra note 35, rec. 9.Google Scholar
ESHG, supra note 35, rec. 14.Google Scholar
ESHG, supra note 35, rec. 12.Google Scholar
CE Proposal, supra note 36, article 14.Google Scholar
CE Proposal, supra note 36, article 16.Google Scholar
CE Proposal, supra note 36, article 15.1.Google Scholar
25 Recommendations, supra note 37, rec. 20.Google Scholar
ESHG, supra note 35, rec. 15.Google Scholar
Dickenson, D., “Human Tissue and Global Ethics,” Genomics, Society and Policy 1, no. 1 (2005): 4153, available at <http://www.gspjournal.com/> (last visited February 20, 2006).CrossRefGoogle Scholar
Human Tissue Act 2004: chapter 30, section 1, available at <http://www.opsi.gov.uk/acts/acts2004/20040030.htm> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
Id., section 53.Google Scholar
Id., section. 53.Google Scholar
Nuffield Council on Bioethics, Human Tissue: Ethical and Legal Issues, London, 1995, available at <http://www.nuffieldbioethics.org/fileLibrary/pdf/human_tissue.pdf> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
Medical Research Council, Human Tissue and Biological Samples for Use in Research, 2001, at <http://www.mrc.ac.uk/pdf-tissue_guide_fin.pdf> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
Human Tissue Act, supra note 48, section 1, schedule 5, paragraph 10; see also Parry, B., “The New Human Tissue Bill: Categorization and Definitional Issues and Their Implications,” Genomics, Society and Policy 1, no. 1 (2005): 7485.Google Scholar
Human Tissue Act, supra note 48, section 1.Google Scholar
Human Tissue Act, supra note 48, section 44.Google Scholar
The purposes listed in Schedule 1 are as follows: General: Anatomical examination; Determining the cause of death; Establishing after a person's death the efficacy of any drug or other treatment administered to him; Obtaining scientific or medical information about a living or deceased person which may be relevant to any other person (including a future person); Public display; Research in connection with disorders, or the functioning, of the human body; Transplantation. Deceased Persons: Clinical audit; Education or training relating to human health; Performance assessment; Public health monitoring; Quality assurance.Google Scholar
Art. L. 1122-1-1 Code de la santé publique (author's translation: Code of Public Health).Google Scholar
See also id., L. 1123–1.Google Scholar
Id., L. 1245–2.Google Scholar
Medical Research Council, Natural Sciences and Engineering Research Council, Social Sciences and Humanities Research Council (SSHRC), Tri-Council Policy Statement: Ethical Conduct for Research Involving Human, Ottawa, August 1998, available at <http://www.pre.ethics.gc.ca/english/pdf/TCPS%20June2003_E.pdf> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
Id., article 2.1.Google Scholar
Id., article 10.3(b).Google Scholar
Id., article 8.6.Google Scholar
Canadian Biotechnology Advisory Committee, Genetic Research and Privacy – Advisory Memorandum, Ottawa, February 2004, at <http://cbac-cccb.ca/epic/internet/incbac-cccb.nsf/vwapj/genetic_research_privacy.pdf/$File/genetic_research_privacy.pdf> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
Canadian Institutes of Health Research, CIHR Best Practices for Protecting Privacy in Health Research, Ottawa, 2005, Element 2, at <http://www.cihr-irsc.gc.ca/e/documents/pbp_sept2005_e.pdf> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
Id., Element 3.Google Scholar
Id., Elements 3.31 – 3.3.5.Google Scholar
Id., Elements 3.3.6 and 3.3.7.Google Scholar
45 CFR 46.101(b)(4).Google Scholar
Wolf, L. and Lo, B., “Untapped Potential: IRB Guidance for the Ethical Research Use of Stored Biological Materials,” IRB Ethics and Human Research 26, no. 4 (2004): 18.CrossRefGoogle Scholar
45 CFR 46.116 (d).Google Scholar
45 CFR 46.102(f).Google Scholar
Genetic Privacy Act, supra note 12, section 131 (d) (1) and (2).Google Scholar
Office for Human Research Protections (OHRP), Department of Health and Human Services (HHS), Guidance on Research Involving Coded Private Information or Biological Specimens, August 10, 2004, at <http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf> (last visited February 8, 2006); Note: Tissues may be used in conjunction with medical or dental records. For privacy protections afforded to these records, see Health Insurance Portability and Accountability Act of 1996, Public Law 104–191, 104th Congress, at <http://aspe.hhs.gov/admnsimp/pl104191.htm> (last visited February 8, 2006).+(last+visited+February+8,+2006);+Note:+Tissues+may+be+used+in+conjunction+with+medical+or+dental+records.+For+privacy+protections+afforded+to+these+records,+see+Health+Insurance+Portability+and+Accountability+Act+of+1996,+Public+Law+104–191,+104th+Congress,+at++(last+visited+February+8,+2006).>Google Scholar
Ethikrat, Nationaler, Biobanks for Research – Opinion, March 17, 2004, at <http://www.ethikrat.org/_english/publications/Opinion_Biobanks-for-research.pdf> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
Id., regulatory proposal 2.Google Scholar
Id., regulatory proposal 3.Google Scholar
Id., regulatory proposal 3.Google Scholar
Id., regulatory proposal 4.Google Scholar
Id., regulatory proposals 5, 6, 9, 12.Google Scholar
Id., regulatory proposal 17.Google Scholar
Id., regulatory proposal 10.Google Scholar
The Oxford English Dictionary, 2d ed., s.v., “vulnerable.”Google Scholar
Dictionary.com, “vulnerable,” at <www.dictionary.com> (last visited February 8, 2006).+(last+visited+February+8,+2006).>Google Scholar
See, e.g., CIOMS, supra note 13, Introduction.Google Scholar
WHO Genetic Databases, supra note 14, rec. 13.Google Scholar
ESHG, supra note 35, rec. 13.Google Scholar
CE Proposal, supra, note 36, article 3.1, 17. It must be noted that a final version is currently being drafted. Whether the regime governing post-mortem uses will be unchanged remains to be seen.Google Scholar
25 Recommendations, supra note 37, rec. 24.Google Scholar
Genetic Privacy Act, supra note 12, sections 131, 133.Google Scholar
Human Tissue Act, supra note 48 section. 4, (a) to (e).Google Scholar
Code of Public Health, supra note 57, art. L. 1121–14.Google Scholar
Code of Public Health, supra note 57, art. L. 1232–1.Google Scholar
Code of Public Health, supra note 57, art. L. 1141–6.Google Scholar
Code of Public Health, supra note 57, art. L. 1241–6.Google Scholar
45 CFR 46.102(f).Google Scholar
OHRP Guidance, supra note 77.Google Scholar
Genetic Privacy Act, supra note 12, sections 101(a), 131(a)(3)(c).Google Scholar
Ethikrat, Nationaler, supra note 78, at 9.2.Google Scholar
See, e.g., CIOMS, supra note 16, Introduction.Google Scholar
See CIOMS, supra note 16, Guideline 9; Council of Europe, Parliamentary Assembly, Draft Additional Protocol to the Convention on Human Rights and Biomedicine, on Biomedical Research, September 2003, article 19, and commentary, at <http://assembly.coe.int/Documents/WorkingDocs/doc03/EDOC9924.htm> (last visited February 8, 2006); WHO Genetic Databases, supra note 14, rec. 11.+(last+visited+February+8,+2006);+WHO+Genetic+Databases,+supra+note+14,+rec.+11.>Google Scholar
Id., article 19, commentary, paragraph 106.Google Scholar
Id., article 19.Google Scholar
Id., article 19.Google Scholar
CIOMS, supra note 16, commentary on guideline 13.Google Scholar
Human Tissue Act, supra note 48, Part I, 1(d), and Schedule 1 Part 1,6.Google Scholar
Human Tissue Act, supra note 48, Part 1, 2.Google Scholar
Human Tissue Act, supra note 48, Part 1, 6.Google Scholar
Loi du 6 janvier, supra note 60, art 54. (Author's translation: Act of January 6th).Google Scholar
Code of Public Health, supra note 57, art. L. 1241–6.Google Scholar
Tri-Council Policy Statement, supra note 61, at 2.5.Google Scholar
Tri-Council Policy Statement, supra note 61, at 2.7.Google Scholar
Tri-Council Policy Statement, supra note 61, at 2.8.Google Scholar
CBAC Memorandum, supra note 65.Google Scholar
CIHR Privacy Best Practices, supra note 64, Element 3's “Link to Tri-Council Policy Statement (2003).”Google Scholar
45 CFR 46.404.Google Scholar
45 CFR 46.405.Google Scholar
45 CFR 46.406.Google Scholar
45 CFR 46.407.Google Scholar
45 CFR 46.108.Google Scholar
45 CFR 46.108 and 46.116.Google Scholar
Genetic Privacy Act, supra note 12, s.131(a)(3)(C) and consistent with 45 CFR 46.408 as such regulation is applicable.Google Scholar
Ethikrat, Nationaler, supra note 74, 9.1.Google Scholar
CIOMS, supra note 16, Guideline 1.Google Scholar
Essentially Yours, supra note 1, at 15.5.Google Scholar
Fleischman, A.R. and Wood, E.B., “Ethical Issues in Research Involving Victims of Terror,” Journal of Urban Health: Bulletin of the New York Academy of Medicine 315 (2002): 79; see also Lin, Z. Owen, A. B. Altman, R. B., “Genomic Research and Human Subject Privacy,” Science 305 (2004): 183.Google Scholar
Norris, F. H., “50,000 Disaster Victims Speak: An Empirical Review of the Empirical Literature, 1981–2001,” Part I of a Three-Part Series; Range, Magnitude and Duration of Effects, Prepared for the National Center for PTSD and the Center for Mental Health Services (SAMHSA), September 2001, available at <http://obssr.od.nih.gov/activities/911/disaster-impact.pdf> (last visited February 20, 2006); cited in Fleischman, , id.; see also, Galea, S. et al., “Psychological Sequelae of the September 11 Terrorist Attacks in New York City,” The New England Journal of Medicine (2002): 346, no. 13, at 982.Google Scholar
Fleischman, , supra note 102.Google Scholar
Rhodes, R., “Justice in Medicine and Public Health,” Cambridge Quarterly of Healthcare Ethics 13 (2005): 14.Google Scholar
It must be noted that no research was done on the remains of the victims of the attack of September 11, 2001. In several public meetings, the New York City Chief Medical Examiner, Dr.Hirsch, Charles, clearly and unequivocally stated this.Google Scholar
Fleischman, , supra note 102.Google Scholar
United Nations Educational, Scientific and Cultural Organization, Universal Declaration on Bioethics and Human Rights, adopted by acclamation October 19, 2005 by the 33rd session of the General Conference of UNESCO, article 18, (b) and (c), available at <http://portal.unesco.org/shs/en/file_download.php/46133e1f4691e4c6e57566763d474a4dBioethicsDeclaration_EN.pdf> (last visited February 20, 2006).+(last+visited+February+20,+2006).>Google Scholar