For participants who wished to learn more, we provided a list of background readings that offer deeper or broader information. Unfortunately we cannot link to many of these online, for copyright reasons.

BIOBANKS – OVERVIEW

1 Navigating an Ethical Patchwork – Human Gene Banks, by Karen J. Maschke, 2005
This article gives a brief summary of the current biobanking projects underway worldwide. As well as outlining the many different types of biobanks that are being used for both specific disease research as well as for unknown purposes, the article addresses several issues of concern over the regulations and use of biobanks such as consent, ownership, and international guidelines. The reading level is relatively simple and straightforward with limited very few scientific references.

2 The biobank of the Norwegian mother and child cohort study: A resource for the next 100 years ,by Ronningen et. al., 2006
This article looks at a different type of biobank, a longitudinal cohort study including pregnant women, their partners and their children. The aim of this particular study is to look at the effects of genetic and environmental factors on pregnancy outcomes and later health of both children and mothers. This article contains scientific language, most of which can be found in the glossary.

3 Biobanks: can they overcome their controversy and deliver on their promise to unravel the origins of common disease? by Oonagh Corrigan, 2006
This article raises a few of the most important concerns regarding current biobank practice. Beginning with an overview of population biobanks, Corrigan raises the issues of consent processes, governance, re-contacting research participants as well as the commodification of human tissues for pharmaceutical companies. Reading is relatively simple with a few scientific terms that can be found in the glossary.

SCIENTIFIC PERSPECTIVES

4 The case for a US prospective cohort study of genes and environment, by Francis S. Collins, 2004
This article presents an argument for the benefits of local large-scale population-based biobanks. Though there are large-scale biobank projects going on in the UK, Iceland, Estonia, Germany, Quebec, and Japan, many leading U.S. scientists believe that the U.S. needs one of its own for several reasons. Though his article is specific to the U.S., a similar argument could be made by others living in regions that also lack biobanks. This article uses a number of technical terms, most of which are defined in the glossary.

5 Feature: Human Gene Banks, by Garrath Williams, 2005
In this article the author questions recent efforts to build large-scale population-based biobanks for medical research. After looking at two such projects in the UK and Iceland as well as drawing a comparison with better established forensic biobanks, he suggests that population-based biobanks for medical research are not worth the money needed to develop them. This article is very readable, containing very few technical terms.

6 Human Genome Research, U.K. Parliament Report Summary, 2000
This article is a summary of a report drafted for members of the U.K. Parliament that outlines the main developments, implications and issues that have arisen from human genome research. It provides an excellent overview of the issue in general. The summary is designed for readers from a non-scientific background, with most occurrences of technical terms accompanied by detailed explanation.

INDIGENOUS PERSPECTIVES

7 Spheres of Influence: Indi-gene-ous Conflicts, by Schmidt, 2001
This is a short, balanced and friendly summary of key indigenous concerns about biobanking. It opens with a notorious case of research amongst the Nuu-chah-nulth First Nations on Vancouver Island and covers most of the important issues. Colourful illustrations, journalistic-style and lack of jargon make this an easy read.

8 The Human Tissue Trade: The Global Traffic and Market in Human Biomaterials, RAFI, 1997
RAFI (now ETC Group) is an activist organisation based in Ottawa. It was central to campaigns against the proposed Human Genome Diversity Project in 2000. This paper is important because it conveys a radical perspective. You may appreciate the novel ideas, investigative approach and revelations of ‘a human tissue trade’ presented. You may dispute the analysis or find the facts to be over-stretched and the arguments to be less ‘balanced’ than academic papers or mainstream media stories.

9 DNA on Loan: Issues to Consider When Carrying Out Genetic Research with Aboriginal Families and Communities, by Laura Arbour and Doris Cook, 2006
This paper describes some of the challenges and solutions to carrying out genetic research respectfully within aboriginal communities in Canada. It is written by a leading geneticist with extensive experience of community-based research, and a leading aboriginal policy analyst. It provides a readable and balanced overview of key issues and cutting-edge developments such as ‘DNA on loan’. Read the first four pages if you don’t have time for the whole article.

RACE AND BIOBANKS

10 The Meanings of “Race” in the New Genomics: Implications for Health Disparities Research, by Lee, Sandra Soo-Jin, Joanna Mountain, Barbara A. Keonig, 2001
The aim of this paper is to critique the concept ‘race’ as a legitimate scientific variable in genomic research. The authors discuss how genetic technology has been deployed in ‘proving’ racial identity and the implications this causes in targeting genetic screening for racially identified ‘at-risk’ groups, including the potential for stigmatization and discrimination. The authors argue that the application of a naïve genetic determinism will not only reinforce the idea that discrete human races exist, but will divert attention from the complex environmental, behavioral, and social factors contributing to an excess burden of illness among certain segments of the diverse U.S. population. This is a fairly difficult read and lengthy paper.

11 Do Races Differ? Not really, Genes Show, by Natalie Angier, New York Times, August 22, 2000
This article questions whether or not ‘race’ is a scientifically sound concept to classify the human population. The author provides numerous arguments from the scientific community who claim that our genetic makeup proves that ‘race’ does not exist in biological terms, but is a social construction.

12 Race Is Seen as Real Guide to Track Roots of Disease, by Nicholas Wade, New York Times, July 30th, 2002.
This article provides a report on arguments from the scientific community who claim that the concept ‘race’ is a legitimate determinant to help researchers understand ethnic differences in disease and response to drugs.

DISABILITY PERSPECTIVES

13 Disability, Genetics, and Global Justice, by Tom Shakespeare, 2005
This article aims to articulate various arguments from disability communities who advocate a need for social justice and who are against biomedicine and genetic research that aims to ‘cure’ disabilities. The author argues that research should focus on the prevention of impairments and disabilities on a global scale. He also argues that access to resources for impaired persons should be a central concern.

14 Expand prenatal gene tests, MDs urge. Recommendations raise fear of having only perfect babies, by Carolyn Abraham, February 6, 2007
This news article from the Globe and Mail reports on the Down Syndrome Society’s reaction to Canada’s Gynaecologists and Obstetricians recommendations that every woman in the country, regardless of age, should be given access to prenatal genetic screening to identify more babies with birth defects and disabilities before they are born. The fear from the Down Syndrome Society is that these guidelines could lead to further discrimination and eugenic ideals.

RELIGIOUS PERSPECTIVES

15 Categorizing Genes: Commodifying People? by Donald Bruce, Society, Religion, and Technology Project, Church of Scotland, 2004
This explores how genetic research, such as the Human Genome Project, frames the value of living organisms and how these scientific understandings are challenged by some assumptions from a Christian ethical reflection. The author argues against seeing human beings in terms of their biological function and raises concerns against notions of an ideal individual perfection. Although the author acknowledges the need for genetic research, he argues that such research risks leading to valuing human life in individualistic terms, whereas human beings should be valued on a wider more holistic level. This paper is at times a difficult conceptual read, but it is shorter in length.

16 Biotechnology – its challenges to the churches and the world, report by World Council of Churches
This report is a statement from the World Council of Churches in response to the theological and ethical issues raised by various dimensions of biotechnological advances. The report discusses human genetic engineering, reproductive technology, intellectual property, and environmental effects from a theological and ethical perspective. It makes recommendations and proposals on aspects of these technologies that are consistent with the perspectives of the member churches. The report reaffirms the sacredness and essential goodness of God’s creation, and calls for ongoing reflection on questions about the impact of biotechnologies on the meaning of the “integrity of creation” and the nature of human life. The language is a fairly easy read, but the paper is lengthy.

17 Genetics, Genetic Engineering, the Human Genes, and Genetic Treatment , an Islamic Perspective, 1998
The website provides recommendations from a 1998 seminar held by the Islamic Organisation for Medical Sciences in Kuwait.

CONSENT

18 Consent revisited: points to consider, by Bartha Knoppers, 2007
This paper contains some jargon, so just ignore any terms that are unfamiliar to you. You do not need them understand the key concepts in the paper. This document shows how biobanks pose special challenges to conventional notions of consent and confidentiality. It also briefly discusses benefit sharing.

PRIVACY

19 DNA profiles blocked from public access; Health agency takes down online databases after a study reveals new analysis could confirm identities, by Los Angeles Times Author Jason Felch , Aug 2008
This article discusses how the National Institutes of Health quietly blocked public access to databases of patient DNA profiles after learning of a study that found the genetic information may not be as anonymous as previously believed. An independent study released today reported that a new type of DNA analysis could confirm the identity of an individual in a pool of similarly masked data if that person’s genetic profile was already known. Such a confirmation could reveal patients’ participation in a study about a specific medical condition, denying them their presumed confidentiality. This article is quite short, and is easy to read.

RESEARCH ETHICS BOARDS

20 TriCouncil Policy Statement: Ethical Conduct for Research Involving Humans
This is a section from the Tri-Council Policy Statement (TCPS) that outlines the function and membership of research ethics boards (REBs). The TCPS is an important document that provides guidance on conducting ethical research involving human subjects across a range of disciplines. Please note that in the United States, REBs are referred to as Institutional Review Boards (IRBs) and you may see reference to IRBs in the literature; however, these boards serve the same role as REBs.

OVERVIEW

21 Population Biobanking in Canada: Ethical, Legal and Social Issues, by Lorraine Sheremeta, 2003
This document gives a broad overview of many issues related to biobanking including international comparisons, public opinion research, privacy, and commercialisation. It contains a great deal of information but don’t feel as though you have to read the whole thing. You may want to review the contents page at the beginning of the document to locate issues that are of particular interest to you.

GOVERNANCE

22 The Canadian Agency for the Oversight of Research Involving Humans: A Reform Proposal, by Jocelyn Downie
The first few pages (75-81) of this article give a run down of the current problems and challenges in the Canadian system of overseeing research involving human subjects. Biobanks fall within this system, and so many of the concerns raised by the author may have implications for biobanks, as well as the research they support. Following her critique of the current system, the author then makes some proposals for change. This portion of the paper is interesting, but perhaps less relevant as background for this event.

23 Research Ethics Recommendations for Whole-Genome Research: Consensus Statement, by Timothy Caulfield, Amy L. McGuire, Mildred Cho, Janet A. Buchanan, Michael M. Burgess, Ursula Danilczyk, Christina M. Diaz, Kelly Fryer-Edwards, Shane K. Green, Marc A. Hodosh, Eric T. Juengst, Jane Kaye, Laurence Kedes, Bartha Maria Knoppers, Trudo Lemmens, Eric M. Meslin, Juli Murphy, Robert L. Nussbaum, Margaret Otlowski, Daryl Pullman, Peter N. Ray, Jeremy Sugarman, Michael Timmons
This paper starts with initial considerations, including general recommendations about governance and the characterization of the research activities related to the whole genome. It is important to note that while there was consensus on all recommendations, there was a good deal of debate about the degree to which they satisfy existing ethical and legal norms. All participants involved believed that these are early days in the field of whole-genome research. Research ethics guidance is needed immediately, but we should continue to explore the ethical, legal, and social implications of this rapidly evolving field.

BENEFIT SHARING

24 Body of Research – Ownership and Use of Human Tissue, by Charo Alta, 2006
This article summarizes in a concise manner the ongoing debates about body ownership and human tissue for research, underlining that ownership of our body and tissue is far from established in legal terms. By touching two historic cases, Moore and Catalona in the United States, the author illustrates the difficulty in dealing with patient´s rights and researchers interests. It advocates balancing respect for individuals and collective interest. A short and relatively simple read.

25 Benefit Sharing – Experiments in Governance, by Cory Hayden, 2003
In this article, the author explores different models of organizing institutions (governance) for benefit sharing in biotechnology. Hayden underlines the difference between benefit sharing and intellectual property protection or patents and explores several ways to ensure the channeling back of returns to affected communities by using other resource examples. It creatively links experiences in agriculture through the Convention on Biodiversity (CBD) with potential models in health. An accessible read, with global policy references.

26 Whose Tissue is it Anyway? by Jasper Bovenberg, 2005
The article raises interesting questions about property rights in tissue and research by-products from a legal point of view. Bovenberg is a well know scholar whose creativity and out-of-the-box thinking allow him to suggest a tax system as an example of the possible alternatives for balancing the rights of researchers and tissue donors.
Well written and innovative arguments in the article.

DEMOCRATIC DEFICIT

27 Public consultation in bioethics. What’s the point of asking the public when they have neither scientific nor ethical expertise? by Mairi Levitt, 2003
This paper contrasts and critiques two models of public consultation. The first is based on the deficit model of public understanding, in which the public is viewed as lacking scientific information. In the second model, the public is viewed as an important source of information and input for science and technology decisions. Relatively straightforward with few scientific references.

28 Constructing the scientific citizen: science and democracy in the biosciences, by Alan Irwin, 2001
Discusses the concept of the scientific citizen related to public participation. Presents points both for and against deliberation events embedded within a variety of examples. Longer, yet engaging and with few scientific references.

29 Biobanking in British Columbia: Discussions of the Future of Personalized Medicine through Deliberative Public Engagment by Michael Burgess & Kieran O’Doherty, 2008.
This paper examines the role of deliberative democracy theory and practice as a means to enhance policy approaches to ethical and social issues related to biobanks. It describes the case of a deliberative public engagement in which a diverse group of citizens deliberated on the appropriate values that should guide biobanking in British Columbia, and argues that the use of such methods is a necessity if we are to meaningfully consider diverse `public interests’ during the development of biobanks and thereby personalized medicine.

SOCIAL IMPLICATIONS OF GENETIC RESEARCH

30 Patient Group Advocate Perspectives on Biobanks and Genetic Research, by Samantha MacLean, 2006
This is a brief summary that gives an overview of themes, hopes and concerns about genetic research an biobanking that were raised by individuals who work with patients of genetic illnesses and advocacy groups. This summary is a part of a larger research paper, forthcoming. The abstract is very short with a relatively simple reading ease level.

31 Rights and Responsibilities in the New Genomics Era, by Anne Kerr, 2003
This article discusses several ethical issues, including the question of responsibility and obligation to partake in genetic research. This article, although it is longer, addresses a broad range of interests at a moderately difficult reading level.

32 Individuals with Genetic Conditions Twice as Likely to Report Denial of Health Insurance than Individuals with Other Chronic Illness, 2007
This is an article from the Johns Hopkins Bloomberg School of Public Health website that discusses the results of a study looking at patient fears of genetic discrimination. Several people with both genetic and other chronic diseases were interviewed and expressed fears over insurance and employment discrimination based on their disease prognosis. This article is relatively short and is easy to read.

33 Experts Wrestle with Social, Ethical Implications of Human Genome Project, by Brian Vastag, 2001
This article discusses both the scientific aspects and the social implications of the Human Genome Project’s discoveries. Among the social implications, Vastag raises the fact that genetic testing has major life consequences for people being tested because there is a blurred area between having a mutated gene or genes, and actually having a genetic disease. The article also gives an overview of how the HGP’s ELSI project hopes to solve many of the social concerns related to genetic research. A very short and relatively simple read.

CHILDREN AND BIOBANKING

34 Biobanks and Longitudinal Studies: Where are the Children? By Julie Samuël, Nola M. Ries, David Malkin and Bartha Maria Knoppers, 2008
This paper discusses four complex issues to do with biobanking and children: parental authorization, assent and consent of the child, withdrawal from research and return of results. The paper suggests policies to elaborate guidelines that respects the rights of the child in biobanking.