Ethical issues in the collection, storage, and research use of human biological materials.

Human biological materials (HBMs) are samples of blood, DNA, organs and tissues commonly obtained during routine surgical procedures or through direct donation by an individual. This article reviews four of the most pressing issues arising from the collection, storage, and use of HBMs in research: current regulations governing research with human subjects, misuse of genetic information, economic factors, and public knowledge.

[1]  G. Annas,et al.  Privacy rules for DNA databanks. Protecting coded 'future diaries'. , 1993, JAMA.

[2]  J. Andreoni.  IMPURE ALTRUISM AND DONATIONS TO PUBLIC GOODS: A THEORY OF WARM-GLOW GIVING* , 1990 .

[3]  S. Holtzman,et al.  Ethical issues in genetic research: disclosure and informed consent , 1997, Nature Genetics.

[4]  Tom L. Beauchamp,et al.  Ethics and epidemiology , 1998 .

[5]  Jocelyn Kaiser,et al.  Population Databases Boom, From Iceland to the U.S. , 2002, Science.

[6]  M. Khoury,et al.  Public Attitudes regarding the Donation and Storage of Blood Specimens for Genetic Research , 2001, Public Health Genomics.

[7]  J. Mcewen,et al.  Stored Guthrie cards as DNA "banks". , 1994, American journal of human genetics.

[8]  N A Holtzman,et al.  Promoting safe and effective genetic testing in the United States. Final report of the Task Force on Genetic Testing. , 1999, Journal of child and family nursing.

[9]  K. Azarow,et al.  Ethical use of tissue samples in genetic research. , 2003, Military medicine.

[10]  A. Mongoven.  Sharing our body and blood: organ donation and feminist critiques of sacrifice. , 2003, The Journal of medicine and philosophy.

[11]  Richard R Sharp,et al.  Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations. , 2002, Environmental health perspectives.

[12]  M. Benecke.  Coding or non‐coding, that is the question , 2002, EMBO reports.

[13]  D. Normile.  Japan Guidelines Under Fire After Protest Halts Study , 2003, Science.

[14]  Lori B. Andrews,et al.  Assessing Genetic Risks: Implications for Health and Social Policy , 1994 .

[15]  G. Annas,et al.  Protecting genetic privacy , 2001, Nature Reviews Genetics.

[16]  V. Livolsi,et al.  Use of human tissues in research: clarifying clinician and researcher roles and information flows. , 1997, Journal of investigative medicine : the official publication of the American Federation for Clinical Research.

[17]  M Gwinn,et al.  Informed consent for population-based research involving genetics. , 2001, JAMA.

[18]  M. White,et al.  Informed Consent for Research on Stored Blood and Tissue Samples: A Survey of Institutional Review Board Practices , 2002, Accountability in research.

[19]  Holtzman Na,et al.  Promoting safe and effective genetic testing in the United States. Final report of the Task Force on Genetic Testing. , 1999, Journal of child and family nursing.

[20]  B. Stegmayr,et al.  Informed consent for genetic research on blood stored for more than a decade: a population based study , 2002, BMJ : British Medical Journal.

[21]  J. Moreno,et al.  Updating protections for human subjects involved in research. Project on Informed Consent, Human Research Ethics Group. , 1998, JAMA.

[22]  D. Winickoff,et al.  The charitable trust as a model for genomic biobanks. , 2003, The New England journal of medicine.

[23]  E. Emanuel,et al.  The debate over research on stored biological samples: what do sources think? , 2002, Archives of internal medicine.

[24]  M. Khoury,et al.  Public Knowledge regarding the Role of Genetic Susceptibility to Environmentally Induced Health Conditions , 2003, Public Health Genomics.

[25]  N. Holtzman,et al.  Assessing Genetic Risks , 1994 .

[26]  Amalia M. Issa,et al.  Ethical considerations in clinical pharmacogenomics research. , 2000, Trends in pharmacological sciences.

[27]  M. McQueen.  Ethical and Legal Issues in the Procurement, Storage and Use of DNA , 1998, Clinical chemistry and laboratory medicine.

[28]  Daniel Kahneman,et al.  Valuing public goods: The purchase of moral satisfaction , 1992 .

[29]  M. Mulvihill,et al.  Attitudes and beliefs about organ donation among different racial groups. , 1998, Journal of the National Medical Association.

[30]  D. Daniels,et al.  Organ donation in the Hispanic population: dondé estan ellos? , 1994, Journal of the National Medical Association.

[31]  G. Annas,et al.  The Genetic Privacy Act and commentary , 1995 .

[32]  Richard M. Titmuss,et al.  The gift relationship , 1970 .

[33]  B. Jeffers.  Human biological materials in research: ethical issues and the role of stewardship in minimizing research risks. , 2001, ANS. Advances in nursing science.

[34]  B. Frey,et al.  The Cost of Price Incentives: An Empirical Analysis of Motivation Crowding-Out , 1997 .

[35]  Noreen Clancy,et al.  Case Studies of Existing Human Tissue Repositories , 2003 .

[36]  C. Campbell.  Religion and the Body in Medical Research , 1998, Kennedy Institute of Ethics journal.

[37]  M. Rothstein,et al.  Pharmacogenomics and the (ir)relevance of race , 2001, The Pharmacogenomics Journal.

[38]  Noreen Clancy,et al.  Case Studies of Existing Human Tissue Repositories: "Best Practices" for a Biospecimen Resource for the Genomic and Proteomic Era , 2003 .

[39]  J. Domínguez,et al.  Knowledge and attitude about organ donation in a Hispanic population. , 1991, Transplantation proceedings.

[40]  Philip E. Graves,et al.  Valuing Public Goods , 2003 .

[41]  Anne Cambon-Thomsen,et al.  Assessing the impact of biobanks , 2003, Nature Genetics.

[42]  F. Kaplan.  Skin and bones. , 1996, Archives of dermatology.

[43]  L M Kopelman,et al.  Informed consent for genetic research on stored tissue samples. , 1995, JAMA.

[44]  L. Biesecker,et al.  Genetics and the dead: implications for genetics research with samples from deceased persons. , 1997, American journal of medical genetics.

[45]  G. Annas.  Privacy Rules for DNA Databanks , 1993 .