Top Banner
April 2011 / Vol. 16 / No. 8 A biobank is an organized collection of human biological samples and associated data [1] . Biobanks come in many shapes and sizes: some are small and may be disease-specific while others contain samples from a large population base. While recognized as an important research tool, biobanks are also associated with ethical challenges [2-5] . In this short article I will describe some ethical issues associated with biobanks and highlight some relevant guidelines from the updated Tri-Council Policy Statement (TCPS2). Informed consent in the research context allows individuals to exercise control over the potential use of any donated tissue [2] . Research partici- pants must be told the aims and methods of the research, anticipated benefits and risks, and have the right to withdraw without penalty [6] . However, the application of informed consent to biobank research is not straight forward; research that will be performed using a sample is often not known at the time of donation. Rather than obtaining permission each time a new experiment is proposed, many biobanks require broad or blanket consent in which participants consent to a broad range of possible research activities. Others have suggested alternative consent models such as the authorization model, which allows individuals to specify the future uses of their samples and the degree to which they want to be involved in future decision-making at the time of donation [7] . Feature: Ethical Issues Associated with Biobanks In This Issue 1 Feature: Ethical Issues Associated with Biobanks 4 Director’s Corner: Bits and Bytes 5 Announcements 8 Article: Data Share and Share Alike 11 Faculty Profile: Sue MacRae 12 Fellowships 14 Call for Submission 15 Seminars, Events & Conferences 22 Recent Publications 23 Submission & Contact Information Michael Szego Academic Fellow in Clinical and Organizational Ethics Joint Centre for Bioethics cont’d...
23

Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

Jun 17, 2020

Download

Documents

dariahiddleston
Welcome message from author
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
Page 1: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8

A biobank is an organized collection of human biological samples and associated data [1]. Biobanks come in many shapes and sizes: some

are small and may be disease-specific while others contain samples from a large population base. While recognized as an important research tool, biobanks are also associated with ethical challenges [2-5]. In this short article I will describe some ethical issues associated with biobanks and highlight some relevant guidelines from the updated Tri-Council Policy Statement (TCPS2).

Informed consent in the research context allows individuals to exercise control over the potential use of any donated tissue [2]. Research partici-pants must be told the aims and methods of the research, anticipated benefits and risks, and have the right to withdraw without penalty [6]. However, the application of informed consent to biobank research is not straight forward; research that will be performed using a sample is often not known at the time of donation. Rather than obtaining permission each time a new experiment is proposed, many biobanks require broad or blanket consent in which participants consent to a broad range of possible research activities. Others have suggested alternative consent models such as the authorization model, which allows individuals to specify the future uses of their samples and the degree to which they want to be involved in future decision-making at the time of donation [7].

Feature: Ethical Issues Associated with Biobanks

cont’d...

In This Issue

1 Feature: Ethical Issues Associated with Biobanks

4 Director’s Corner: Bits and Bytes5 Announcements8 Article: Data Share and Share Alike11 Faculty Profile: Sue MacRae12 Fellowships14 Call for Submission15 Seminars, Events & Conferences22 Recent Publications23 Submission & Contact Information

Michael SzegoAcademic Fellow in Clinical and Organizational Ethics

Joint Centre for Bioethics

cont’d...

Page 2: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 2

Feature: Ethical Issues Associated with Biobanks (cont’d)

The TCPS2 outlines the conditions required for informed consent in the biobank context (article 3.2 & 12.2), which includes a description of the intended use of any biological material. The ability for a biobank research participant to withdraw consent is also recognized in the TCPS2. Specifically, research subjects can request that their biological sample and/or data be discarded upon withdrawal of consent (article 3.1).

The unintended leak of confidential information about an individual to an unauthorized third party is one of the main risks associated with participating in biobank research [8]. The risk of physical harm is usually low since participants are nor-mally subject to minimally invasive procedures (such as a blood draw) or are asked to donate tissue/DNA already procured from medical treatment. To mitigate privacy risks, participant information can be de-iden-tified or ultra secure databases and sample storage facilities can be used. Both strategies are consistent with the TCPS2 guidelines which require appropriate safeguards to protect research participants from the unauthorized handling of their material (article 12.5).

While there is a general understanding that genetic research results should be returned to the community in the form of research publications, newsletters etc., there is no consensus on whether individual research results should be returned [3, 9, 10]. One claim often made is that biobanks are for research purposes and that research results are often aggregated and of limited clinical significance for participants [2, 3]. The research community has also expressed concern that returning individual results will be time consum-ing and cause undue stress to research participants

[11]. I favour the recommendations of a World Health Organization (WHO) report that identified three conditions that must be met prior to disclosure of individual research results: 1) the data should be clini-cally beneficial; 2) disclosure should avert or minimize significant harm; and 3) there is no indication that the individual in question would prefer not to know [12]. Under these three conditions, research results would

be released in a small number of cases to individuals who want and could benefit from the information. The TCPS2 places an obliga-tion on researchers to disclose findings that have been interpreted as having significant

welfare implications for the participant (article 3.2) provided the participant has not indicated a prefer-ence not to know such information (article 13.3), consistent with the WHO recommendations.

Prospective research participants are entitled to infor-mation pertaining to the possible commercialization of their research findings [13]. However, it is usually difficult to predict the potential for commercialization at the time of donation since the nature of the experi-ments employing the donated sample are normally not known. A custodianship model of biobanking governance has recently been proposed; the authors suggest that managing commercialization in a fashion that fosters future research is one way for a biobank to acknowledge the tissue donation “gift” from research participants [14].

Whole genome sequencing (WGS) will soon be eco-nomically feasible on a large scale [15]. The output of WGS contains substantially more information than the

Biobanks, particularly ones associated with large longitudinal studies, require

broad public support and research participant trust to be successful.

cont’d...

Page 3: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 3

current technology used in genome wide association studies. From an ethics standpoint, this increase in information raises many questions particularly in the domains of privacy and the return of research results that have yet to be addressed. WGS will also change the nature of many biobanks from a repository of human tissue to a personal genome library.

Biobanks, particularly ones associated with large longitudinal studies, require broad public support and research participant trust to be successful. Given the lack of consensus in the academic literature on what constitutes ethical biobanking policies, research subject engagement should be especially important and informative. To date, I am aware of only one article examining the views of biobank participants [16]. Future studies will need to address this knowl-edge gap to facilitate informed policy decisions in the future, ensuring the success of this important scien-tific resource.

Cambon-Thomsen, A., 1. The social and ethical issues of post-genomic human biobanks. Nat Rev Genet, 2004. 5(11): p. 866-73.Cambon-Thomsen, A., E. Rial-Sebbag, and B.M. 2. Knoppers, Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J, 2007. 30(2): p. 373-82.Knoppers, B.M., 3. Consent revisited: points to consider. Health Law Rev, 2005. 13(2-3): p. 33-8.Salvaterra, E., et al., 4. Banking together. A unified model of informed consent for biobanking. EMBO Rep, 2008. 9(4): p. 307-13.Caulfield, T., et al., 5. Research ethics recommendations

for whole-genome research: consensus statement. PLoS Biol, 2008. 6(3): p. e73.Beauchamp, T.L. and J.F. Childress, 6. Principles of biomedical ethics. 6th ed. 2009, New York: Oxford University Press. xiii, 417 p.Caulfield, T., R.E. Upshur, and A. Daar, 7. DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med Ethics, 2003. 4: p. E1.Ursin, L.O., 8. Biobank research and the right to privacy. Theor Med Bioeth, 2008. 29(4): p. 267-85.Miller, F.A., et al., Duty to disclose what? 9. Querying the putative obligation to return research results to partici-pants. J Med Ethics, 2008. 34(3): p. 210-3.Knoppers, B.M., et al., 10. The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet, 2006. 14(11): p. 1170-8.Affleck, P., 11. Is it ethical to deny genetic research partici-pants individualised results? J Med Ethics, 2009. 35(4): p. 209-13.Organization, W.H. 12. Genetic databases: assessing the benefits and impact on human and patient rights. 2003 [cited 2009 December 15]; Available from: http://www.law.ed.ac.uk/ahrb/publications/online/whofinalreport.doc.Humans, T.-C.P.S.E.C.f.R.I. 1998 [cited Aril 9, 2009]; 13. Available from: http://pre.ethics.gc.ca/eng/index/.Yassin, R., et al., 14. Custodianship as an ethical framework for biospecimen-based research. Cancer Epidemiol Biomarkers Prev. 19(4): p. 1012-5.Collins, F., 15. Has the revolution arrived? Nature. 464(7289): p. 674-5.Melas, P.A., et al., 16. Examining the public refusal to con-sent to DNA biobanking: empirical data from a Swedish population-based study. J Med Ethics, 2010. 36(2): p. 93-8.

Feature: Ethical Issues Associated with Biobanks (cont’d)

Comments on articles in this Newsletter? Email your response to [email protected]. We may publish your comments in the next issue.

Page 4: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 4

with significant ethical dimensions. Claudia Emerson, who has been at the forefront of thinking in this field, highlights some of the ethical issues associated with data sharing including some of the risks for exploita-tion associated with lack of access to data in low and middle income countries. Ensuring equal access to data may enable health research to be more equitably distributed globally.

It is clear that the research environment is rapidly changing. Rather than individual human subjects, we now have a variety of bits and bytes of data in multiple linked data bases that are the “subjects” of research. Regulation and oversight of such research is an important component of the process, but it is poor-ly understood. This is clearly an area ripe for scholar-ship and informed public debate. Michael Szego and Claudia Emerson have helped to chart the path for-ward for understanding the ethical issues at stake.

On another note, with this months Voice we intro-duce a new feature: Faculty Profile. In the months to come we will be profiling the dynamic and talented faculty who contribute so much to the JCB community through their teaching. We can never fully acknowl-edge their essential contributions, so we hope this is a small, but significant step in this direction.

Director’s Corner: Bits and Bytes

Medical research is becoming increasingly complex. A vast array of new technologies is stimu-lating innovative new research methods that raise novel ethical challenges. These challenges arise at multiple areas on the spectrum from research to practice. As two papers in this months Voice show, the ethical issues have local and global ethical implica-tions.

Michael Szego provides a cogent and clear overview of some of the ethical issues arising from modern bio-banks. Traditional ethical concerns such as informed consent take on new nuances in contexts where large linked data sets are created that include biological, demographic and health services data on individu-als. As this data will be retained for long periods of time, the straightforward notion of informed consent seems inapplicable in light of ineffable future uses. How consent should be regarded is a matter of open debate and a ripe area for ethics research. Similarly, issues of return of results, withdrawal from studies, how participants in such studies understand what they have committed to, how trust is maintained in such bio-banks are all topics requiring systematic research. It is clearly time to elaborate an ethics agenda for research in this area to facilitate priority setting and ensure progress in understanding these critical dimen-sions of the modern research endeavour. The Ontario Health Study (see link on JCB home page, http://www.jointcentreforbioethics.ca/index.shtml or https://ontariohealthstudy.ca/) is a local example of a promis-ing and ambitious research program. There are many other such initiatives globally.

One thing is evident about the contemporary research world: it is intensely data rich. Global research creates abundant data sources and data sets, opening up nov-el opportunities for collaboration and innovation. Data access and data sharing thus become important issues

Ross Upshur Director, Joint Centre for Bioethics; Director, Primary Care Research Unit; Canada Research Chair in Primary Care Research; Professor,

Department of Family and Community Medicine, and Dalla Lana School of Public Health, University of Toronto

Page 5: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 5

Announcements

The objectives of the Christine Harrison Bioethics Edu-cation Award for Integration of Theory and Practice are to:

publically recognize individuals who demonstrate •excellence in bioethics education, particularly the ability to highlight the necessary interrelationship of theory and practice;honor the superlative contributions of Dr. Chris-•tine Harrison as a teacher, mentor, and practicing bioethicist who conveys a rich appreciation for the importance of both theory and practice.

One award will be conferred annually by the Univer-sity of Toronto Joint Centre for Bioethics (JCB). The recipient of the award will receive a framed certificate and recognition in the JCB Voice newsletter. All nomi-nees will receive a letter from the Director, Education and Practice informing them that they have been nominated. At the nominee’s request, a letter will be sent to their department chair and/or direct supervi-sor.

Deadline for Nomination: April 15th (annually)

Eligibility: Any member of the JCB community engaged in bioethics education (e.g., as a bioethics course director, practicum supervisor, fellowship rota-tion supervisor, thesis supervisor/committee member, program coordinator/director, lecturer, discussion facilitator) may be nominated. Normally the award

recipient will be recognized for his/her educational contributions to the University of Toronto and/or a JCB-affiliated healthcare organization.

Nomination ProcedureAny individual or group of individuals in the JCB com-munity may submit a nomination.

To be considered, the nomination package must:

include a brief covering letter specifying: •the name of the person being nominated; ◦the name(s) and email addresses of the ◦person(s) nominating him/her; and the letter(s) included to support the nomina- ◦tion

include letter(s) outlining the reasons for nomina-•tion (please see award criteria below) must be received by April 15th (midnight) •

The nominee’s CV is not required and will not be con-sidered in the selection process.

Nominations may be sent (via email or hard copy) to:

JCB Academic SecretaryJoint Centre for BioethicsUniversity of Toronto155 College Street, Suite 754Toronto, ON M5T [email protected]; (416) 978-0871

The Christine Harrison Bioethics Education AwardFor Integration of Theory and Practice

(cont’d on the next page)

Page 6: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 6

Announcements

Philip Hébert is named “Academic Family Physician of the Year”. This award recognizes outstanding contributions to clinical practice, teaching and scholarship in family medicine.

Award CriteriaKey criterion:

effectively conveys in bioethics education activities •the importance—and necessary interrelationship—of both theory and practice in bioethics

Other criteria may include:passion and commitment to education, teaching, •mentoring, and/or supervisionability to integrate research/scholarship, educa-•tion, and practiceeffective educational techniques, curriculum devel-•opment, or program innovations

Selection CommitteeThe Selection Committee will include members from the JCB’s Education Advisory Committee and CORE Network Advisory Committee. These committees are chaired by the Director, Education and Practice. Should the Selection Committee decide in any given year that none of the nominees sufficiently meets the award criteria, it may opt to not confer the award.

ContactFor more information, please contact the JCB’s Direc-tor of Education and Practice ([email protected]).

Ross Upshur is the recipient of the “Award for Excellence for Social Responsibility”. This award recognizes outstanding contributions to the promotion of social accountability and responsibility.

U of T Department of Family and Community Medicine 2010 Awards of ExcellenceThe Awards were announced in March 2011 and will be presented Saturday, April 16th

at the DFCM annual Rosser Academic Day held at the Sunnybrook Estates.

Page 7: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 7

Announcements

Kyle Anstey has been ap-pointed Assistant Professor (Status-Only) in the Depart-ment of Occupational Science and Occupational Therapy (OSOT), Faculty of Medicine, University of Toronto.

Kyle’s research at the intersec-tion of disability studies and bioethics relates very well to the research, education, and practice foci of the De-partment of OSOT. Kyle has been contributing to OSOT over the past couple of years by guest lecturing on “Ethics: From Theory to Practice” in Occupational Ther-apy Practice 1, and by participating as a member of the OSOT Research Committee.

Rebecca Bruni has been appointed Assistant Professor (Status-Only) in the Depart-ment of Family and Community Medicine, Faculty of Medicine, University of Toronto.

Becky already has been con-tributing to DFCM in developing the first ethics curriculum for DFCM residents at Providence

Healthcare (where a new cohort rotates in each month for a one month rotation from the Scarborough Hospi-tal). Becky has also been a dedicated Ethics Tutorial Facilitator in the undergraduate medical program for the past two-and-a-half years. Based on the high qual-ity of her participation and commitment, she was asked by Dr. Pier Bryden to become a member of the Faculty of Medicine’s Ethics and Professionalism Steering Com-mittee (on which she has collaborated with others to review and update 70 hours of UME ethics and profes-sionalism curriculum).

Marcia Sokolowski has been appointed Co-director, Clinical Ethics at Baycrest Cen-tre for Geriatric Care.

Marcia has been with Baycrest for nearly ten years, starting as a volunteer, then as an Ethics Fellow and a Clinical Ethicist.

Marcia is honoured to join her colleague and former supervisor Michael Gordon in sharing the ethics directorship position.

Marcia also has been appointed as Assistant Profes-sor (Status-Only) to the Department of Medicine in the Faculty of Medicine at the University of Toronto.

Randi Zlotnik Shaul received a “Peacemaker Tap-estry Award For Cultural Competence” for her commit-ment to the provision of culturally competent care and service for patients and families at SickKids, by the New Immigrant Support Network at The Hospital for Sick Children. This award was presented by Margaret Keat-ings, Chief Interprofessional Practice and Chief Nurse Executive (right in photo).

Page 8: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 8

Article: Data Share and Share Alike

“All I really need to know I learned in kindergarten”– Robert Fulghum

A few weeks ago I spotted a fellow in the super-market wearing a T-shirt emblazoned with this

truism. I have seen that shirt before, on a few occa-sions, and it is always a source of amusement. I find myself grinning sheepishly as I recall those important life lessons learned so many years ago : ‘say please and thank you’, ‘wash your hands before and af-ter you eat’, ‘clean up after yourself’, ‘remember to share’… . This last dictum is the one that Fulghum placed at the top of the list—“Share Everything”—he wrote, and arguably it is the most difficult to satisfy, especially where research is concerned.

In principle, researchers agree that sharing data is a good idea. Making data widely available for access and exchange between researchers and across disci-plines fosters collaboration and is supposed to yield many benefits, including:

the diversity of opinion and analysis through the •evaluation of alternative hypothesis the prevention of unnecessary duplication of ef-•forts, and redirection of resources to the most promising research endeavorsenabling secondary and meta-analysis, and inde-•pendent verification improving data quality•increasing research capacity by facilitating the •education of new researchers

More broadly, data sharing is said to promote innova-tion which in turn leads to faster and better develop-ment of health products and interventions that could potentially save lives. At a minimum, data sharing is supposed to contribute to progress through increased

knowledge acquisition and dissemination. Or does it? It is not entirely clear whether the availability of more information translates into more knowledge. And the skeptics will tell you that there is no evidence to believe that any of the merits of data sharing are true, since its tangible benefits have yet to be measured. Notwithstanding the criticisms of the naysayers, there is anecdotal evidence to suggest that there is in-creased collaboration amongst those that share data, and this is a good thing (think of kindergarten’s other lessons—play fair, hold hands and stick together).

“Scientists would rather share theirtoothbrush than their data”

– Carol Goble

In practice, data sharing remains more of an ideal than an established norm. Many public and private funders of research now require data sharing as a condition of funding (e.g. NIH, Wellcome Trust), or strongly encourage it, but there are no ‘carrots and sticks’ to enforce and monitor the practice, thus very little sharing actually takes place. Scientists are reluctant to share data. Part of the challenge is that a ‘culture of sharing’ is lacking in many disciplines. Unlike the field of genomics which has grown up in the era of ‘open access’, where researchers have been openly sharing data since 1996, other biomedical domains have not been so conditioned and thus have a poor track record of data sharing, e.g. public health. The existing culture is still one premised on profes-sional structures that reward analysis of data and its publication, but not collection or publication of data. The fear of ‘getting scooped’ looms large; consequent-ly researchers find ways to avoid sharing.

There are also practical and ethical challenges associ-ated with the access and use of data by third parties,

cont’d...

Page 9: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 9

Article: Data Share and Share Alike (cont’d)

concerns around the adequacy of informed consent, and the ability to maintain the privacy and confidenti-ality of data subjects. Moreover, there are lingering questions with normative implications about where data is to be deposited (how will other researchers know where to find it?), what queries can the data be subjected to (who will control access?), and who will pay for this in the long term? We have been asking these questions for some time, and while promising suggestions have been put forth (e.g. adopt incentives for data sharing, reward primary producers, develop large scale government-funded data libraries), no clear solutions for adoption have emerged. As such, “epidemiologists and public health researchers are moving very slowly in the data sharing revolution,” ac-cording to Elisabeth Pisani, epidemiologist and promi-nent data sharing advocate.

From Open Access to Global Access

The revolution that Pisani speaks of is part of a recent trend that has focused significant attention to scal-ing up data sharing, resulting in several key develop-ments. In January 2010, the largest eight funders of health research in the world (the Bill & Melinda Gates Foundation, GAVI, Global Fund to Fight AIDS, Tuberculosis and Malaria, UNAIDS, UNFPA, UNICEF, World Bank, WHO), collectively known as the H8, is-sued a call to action calling for greater access to data to track health progress and increase results-based accountability at both the country and global levels. To achieve this goal, the H8 committed to i) making a public commitment on behalf of each organization to work with other stakeholders to develop a set of spe-cific principles around data sharing within two years; ii) calling on others to do the same; and iii) providing funding that enables data management and shar-ing. In April 2010, in response to this call to action, the World Bank opened up databases containing over

2000 development statistics that had previously been available only to paying subscribers. In the ensuing months, The Gates Foundation developed their soon-to-be-launched Global Health Data Access Principles, and we can surmise that the other members of the H8 are quietly going about the business of developing their own principles.

In the meantime, Oxford convened the first Interna-tional Data Sharing Conference in September 2010, where participants had the opportunity to contribute to the development of the Oxford Data Sharing State-ment, an ongoing work in progress. In January of this year, we saw the release of, “Sharing Research Data to Improve Public Health,” the Joint Statement by ma-jor funders of health research, involving seventeen agencies. Led by the Wellcome Trust and the Hewlett Foundation, signatories to the statement agreed to increase access to and use of data in ways that are equitable, ethical, and efficient. This was followed in February by the report from the World Economic Forum that claimed personal data as a new economic asset class and set out to define the parameters of a balanced ecosystem of data use. The report called for five areas of collective action: i) innovate around user-centricity and trust, ii) define global principles for using and sharing personal data; iii) strengthen the dialogue between regulators and the private sector; iv) focus on interoperability and open standards; and v) continually share knowledge.

“A good decision is based on knowledgeand not on numbers”

– Plato

While there has certainly been a substantial amount of global effort poured into promoting data sharing, we are far from achieving global access. The current data sharing environment favors researchers from

cont’d...

Page 10: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 10

Article: Data Share and Share Alike (cont’d)

affluent countries and yields little benefit to south-ern colleagues, many of whom are the primary data collectors and producers. Researchers in developing coun-tries face numer-ous challenges in accessing and using data due to the limited avail-

ability of resources and expertise, while their coun-terparts in developed countries hold a competitive advantage with respect to analytic capabilities. This makes for inequitable data sharing and creates condi-tions ripe for exploitation. And while there is plenty of talk of harmonizing standards to enable global data sharing, many of our southern colleagues are exclud-ed from the conversation. Some ‘international’ data sharing frameworks are clearly framed from a north-ern perspective and serve primarily northern interests. Recently, I was at a conference where I was surprised to discover ‘technology’ is a principle of data shar-ing (I think even post-modern philosophers would be puzzled by this assertion; what does the ‘principle of technology’ commit me to?!!). If we are to make any real progress in global data sharing, we need to have a truly global conversation, one that goes beyond the usual tenets of informed consent and privacy and takes access seriously from considerations of equity, justice, and inclusion.

For centuries human societies have privileged knowl-edge over data, for knowledge is power. Not much has changed since the time of Plato. But data is

currency in the knowledge economy, and those who control and have access to data wield the power. It is important thus to ensure that data sharing poli-cies and practices do not exacerbate existing power asymmetries, but are used to transform the research landscape into a fairer and more equitable playing field, where in turn greater health equity gains can be achieved. Whitehead wrote that, “wisdom alone is true ambition’s aim, wisdom is the source of vir-tue and of fame; obtained with labour, for mankind employed, and then, when most you share it, best enjoyed.”

References

Chan M, Kazatchkine M, Lob-Levyt J, Obaid T, Schweizer J, Sidibe M, Veneman A, Yamada T. Meeting the Demand for Results and Accountability: A Call for Action on Health Data from Eight Global Health Agencies. Plos Med 2010; 7(1): e1000223.

Pisani E, AbouZahr C. Sharing health data: good intentions are not enough. Bull World Health Organ 2010; 88: 462-466.

Tangcharoensathien V, Boonperm J, Jongudomsuk P. Shar-ing health data: developing country perspectives. Bull World Health Organ 2010; 88: 467-468.

Walport M, Brest P. Sharing research data to improve public health. The Lancet 2011; 377(9765): 537-539.

World Economic Forum. Personal Data: The Emergence of a New Asset Class, 2011. Available: http://www.weforum.org/reports.

Claudia Emerson, PhDResearch Scientist, McLaughlin-Rotman Centre for Global Health; Leader, ‘Access to Data and Biospecimens’ research portfolio

If we are to make any real progress in global data sharing, we need to have a truly global conversation, one that ... takes access seriously from considerations of equity, justice, and inclusion.

Page 11: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 11

Faculty Profile: Sue MacRae

Sue MacRae has been working in the field of patient-centred care, clinical ethics consulting, and program development for 19 years. Her fel-lowship training at University of Chicago MacLean Center for Clinical Medical Ethics and at the Picker Institute in Boston (a non-profit educational and research organization, promoting patient-centered care) give her a unique perspective, combining the needs of patients with the views, responsibili-ties and duties of healthcare professionals and administrators.

Sue’s background is in Nursing and Clinical Ethics practice. She served as the Deputy Director at the University of Toronto Joint Centre for Bioethics from 2000 to 2007. She was instrumental in forg-ing its vision and transforming the centre into an internationally respected organization. Sue is a champion of patient-centred ethics, an innovator in building ethics and relationship centred compe-

tencies and capacity, and a leader in clinical core ethics program development. As an educator, she made innovative contributions to the growth of the highly acclaimed professional Masters of Health Sciences in Bioethics. As a researcher, she promotes strategies that help clarify the values perspective of multiple key stakeholders (that must include patients and families) to assist in resolving conflicts and dilemmas more effectively.

These and other accomplishments were formally acknowledged by the Joint Centre for Bioethics in 2007 with a yearly lecture created in Sue’s name on ethics and patient-centred care. Sue is cur-rently working as a Clinical Ethicist, co-teaching MSC 1052 HS, and writing, lecturing, and provid-ing private counseling and consulting services. She is the president-elect of the Canadian Bioeth-ics Society.

MHSc in Bioethics - Professional ProgramMSC 1052HS, Practical BioethicsCo-Course Director (with Martin McKneally)

Sue MacRae

Page 12: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 12

155 College Street, Suite 754, Toronto, Ontario Canada M5T 1P8 Tel.: [416] 978-2709 Fax: [416] 978-1911 www.utoronto.ca/jcb

A partnership among the University of Toronto; Baycrest Centre for Geriatric Care; Centre for Addiction and Mental Health; Centre for Clinical Ethics, a joint venture of Providence Centre, St. Joseph’s Health Centre, and St. Michael’s Hospital; Holland Bloorview Kids Rehabilitation Hospital; The Hospital for Sick Children; Humber River Regional Hospital; Mount Sinai Hospital; North York General Hospital; Sunnybrook Health Sciences Centre; Toronto

Community Care Access Centre; Trillium Health Centre, Toronto Rehabilitation Institute; and University Health Network.

SSHHAARREEDD SSEENNIIOORR AACCAADDEEMMIICC FFEELLLLOOWWSSHHIIPP IINN CCLLIINNIICCAALL AANNDD OORRGGAANNIIZZAATTIIOONNAALL EETTHHIICCSS22001111--22001122

The University of Toronto Joint Centre for Bioethics (JCB) www.utoronto.ca/jcb and the Centre for Clinical Ethics (CCE) http://www.jointcentreforbioethics.ca/partners/cce.shtml invite applications for a shared paid Senior Academic Fellowship in Clinical and Organizational Ethics starting in July 2011

The JCB is a partnership between the University of Toronto and 13 affiliated healthcare organizations. The JCB studies important ethical, health-related topics through research and clinical activities. The JCB is a network of over 180 multidisciplinary professionals seeking to improve health care standards at both national and international levels. At the JCB, we put theory into practice. Its mission is to provide leadership in bioethics research, education, practice and public engagement. To date 35 Fellows have completed the JCB Fellowship Program since it began in 2000, the vast majority of whom currently work in the field of bioethics.

The CCE is a joint venture of Providence Healthcare, St. Joseph's Health Centre, and St. Michael's Hospital. Ourmission is to enable members of the health care community to identify and resolve ethical issues that arise in the clinical setting. We do this through education, case consultations, policy development, and research. As a faith based Centre we are committed to broadening the understanding of the role that faith plays in the questions that people confront in their search for healing.

The Senior Academic Fellow will spend one year supporting ethics programs in and contributing to the intellectual/scholarly activities of both the JCB and CCE, thereby enhancing his/her skills in clinical and organizational ethics activities (consultation, policy development, teaching, research ethics, research, and other ethics program initiatives). There will be an emphasis on developing leadership capacity in these areas. Through the JCB and CCE,the Fellow will have numerous opportunities for multi-disciplinary ethics networking, continuing education, and access to a wide range of clinical ethics and organizational ethics expertise in a variety of health care settings. This Senior Academic Fellowship provides a unique opportunity for the Fellow to make significant contributions to the ethics programs at the JCB and CCE, and to broaden and deepen their scholarly and clinical/organizational ethical expertise. The stipend for this fellowship is CAD $40,000/year plus 4% vacation pay.

The ideal candidate will hold a graduate degree in religion, e.g. from a divinity school or a faculty of theology, or a graduate degree in religious studies. This candidate must also have undertaken significant course work in ethics, including, but not limited to bioethics, and have completed a fellowship in applied clinical or organizational ethics.Each applicant is expected to propose a research project that involves an application of theological ethics and that can be completed within one year. This requires submitting with one’s application a description of the project, along with an explanation of why the applicant is interested in the project, why the applicant believes it will be meaningful to others in the field, and why the applicant needs ongoing access to a clinical setting in order to accomplish this project.Applicants will be ranked based on (1) their previous training in ethics, including bioethics, (2) their experience in applied clinical or organizational ethics, (3) their commitment to continuing to work in the field of clinical or organizational ethics, (4) their potential to contribute to the field of bioethics, (5) their interpersonal skills, and (6) thesuitability and feasibility of their proposed research project.

If currently enrolled in a degree program, graduate students must submit a letter from their academic supervisor confirming their support of the senior fellowship Application documents are to be emailed to [email protected]. Please send: a) your curriculum vitae, b) a letter of intent describing your interest in clinical/organizational ethics and in this Senior Academic Fellowship, and explaining how your experience prepares you for this particular Fellowship. Please also arrange to have three original letters of reference sent by your referees via email directly to the JCB, to [email protected]. One of the referees must be the Director of the applicant’s previous ethics fellowship. Please ask your referees to address the selection criteria discussed above.

If you have any questions or require further information, please contact Brenda Knowles via e-mail [email protected] or by telephone at 416-978-1907, or by fax at 416-978-1911 or Giles Scofield via e-mail [email protected] or by telephone at 905-522-1155, ext. 3-3866.

The selection committee will accept applications until April 15, 2011.While we appreciate all applications received, only those invited for an interview will be contacted.

Fellowships

Page 13: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 13

Fellowships

Comparative Program on Health and SocietyCall for Applications 2011/2012

Fellowship applications for the 2011/12 academic year are invited. The Comparative Program on Health and Society (CPHS) is a vital and growing research insti-tute based out of the Munk School of Global Affairs at the University of Toronto.

Generously funded by the Lupina Foundation, the CPHS supports innovative, interdisciplinary, compara-tive research on health, broadly defined through our extensive range of fellowships. Our program builds on the scholarly strengths of the University of Toronto in the social sciences, humanities and public health.

For 2011/2012, Doctoral, Post-Doctoral New Faculty and Distinguished Visitor fellowships are offered.

Eligible Research

In order to be eligible to receive a fellowship from the CPHS, your research proposal must be both compara-tive in scope and fall within one of our three research themes. We welcome applications from all academic disciplines, particularly those withing the social sci-ences and humanities.

Research Themes

In order to be eligible for a CPHS fellowship, your research project must fall within one of the three research themes listed below:

1. Social Determinants of Health: Research will ex-plore social, economic, cultural and political determi-nants of health at the local, national and global levels in three primary areas:

a. Socioeconomic Status and Health Outcomesb. Socioeconomic Status and Access to Health and Health-related Servicesc. Accountability mechanisms for health

2. Human Rights, Ethics and the Philosophical Di-mensions of Health: Research will explore emerging or entrenched health issues from the perspective of international and/or comparative human rights law, public health ethics, bioethics and/or other philosophi-cal approaches to achieving social justice and equity in relation to health.

3. Globalization and Health: Research will explore the impact of the processes of globalization on the social determinants of health. Globalization is understood to encompass rapid accelerations in traded goods, ser-vices and capital, changing patterns of production and exchange, labour market integration and migration. Potential research areas may include: global health governance and diplomacy, international trade and economic laws impacting health (particularly maternal and child health), emerging infectious disease pan-demics, health human resource migration, climate change, and HIV/AIDS policy.

Submission Deadline: May 16, 2011

For questions, contact CPHS Program Manager, Col-leen Kelly, at Tel: 416-946-8891, Fax: 416-946-8915 or E-mail: [email protected].

For more details, go to: http://www.utoronto.ca/cphs/ApplyToProgram.shtml#ComparativeResearch.

Page 14: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 14

Fellowships

Postdoctoral Fellow in Health Care Costs and Quality, The Institute for Health and Social Policy at McGill University

The postdoctoral fellow will both lead collaborative studies s/he designs and join this team to contribute to an exciting and unique effort to build a center for comparative data on health care costs and quality in the world’s leading economies. In conjunction with the Director and research staff at IHSP, the postdoctoral fellow will assist in building this harmonized survey data bank for countries to be linked to the policy data for assessing their impact on the health and costs. As part of a research unit with a strong culture of col-laboration, postdoctoral fellows are expected to spend about half of their time leading collaborative research projects of his or her own design and about half of their time working with research staff and the insti-tute’s director on building the policy data centre.

Education/Experience:Applicants must have a Ph.D. in public health, health economics, health policy, or related discipline. A strong background in quantitative analysis of social science data is required. Training and demonstrated experience in multilevel modeling is desirable. Ex-cellent communication, writing, and research skills required. Demonstrated interest and understanding of issues relating to health care costs, health systems, and public health policies. English language proficien-cy required. French and/or other language proficiency an asset.

Review of complete applications will begin April 8, 2011 and will continue until position is filled.

For more details, go to:http://www.mcgill.ca/ihsp/jobs/

Call for Submission

• Call for Papers •Expanding Human Boundaries: Cognitive En-hancement, AI and Mind Machine MergersJournal of Evolution and Technology

Special Issue of Journal of Evolution and Technology

A Journal for the scholarly exploration of the evolution of the human species on “Expanding Human Bound-aries: Cognitive Enhancement, AI and Mind Machine Mergers”

Submissions are invited for a special issue of the journal on the topic of ethical, legal, and social im-plications of cognitive enhancement, mind machine

mergers (cyborgization), uploading and artificial intel-ligence.

Guest editors: * Linda MacDonald Glenn, JD, LLM, Alden March Bio-ethics Institute, Albany Medical Center, New York, USA * Russell Blackford, PhD LLB, University of Newcastle, Australia

Submission deadline: June 1, 2011

Contact us with any questions at [email protected] or [email protected].

For details, go to: http://ieet.org/index.php/IEET/eventinfo/cfpjet2011

Page 15: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 15

Seminars, Events & Conferences

JCB Bioethics Seminars This MonthSeminars are held on Wednesdays at 3:10-4:30 pm, 155 College Street, Suite 754. Currently webcasting fa-cilities are not available; however, all seminars are recorded and will be posted to the ePresence site shortly.

April 6, 2011Giles Scofield, JD, MA (Religion)Clinical Ethicist, Centre for Clinical Ethics; Associate Professor, Dept. of Family and Community Medicine, Faculty of Medicine, University of Toronto; Assistant Professor, Dept. of Family Medicine, Faculty of Health Sciences, McMaster Uni-versity“The Problem with REBs”

April 13, 2011Anne Simmonds, RN, PhDPerinatal Nurse Consultant, Reproductive Care Program of Nova Scotia; Adjunct Faculty, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto“Understanding the Moral Nature of Intrapartum Nursing: Relationships, Identi-ties and Values”

April 20, 2011Chris MacDonald, PhDVisiting Scholar, Clarkson Centre for Business Ethics & Board Effectiveness, Uni-versity of Toronto “Why Research Ethics Standards Should Not Be Universal”

April 27, 2011Ahmad Rabb, MHSc in Bioethics International Student“Evaluation of Research Ethics Boards [REB] Monitoring Process in Canada”

Page 16: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 16

Seminars, Events & Conferences

April 6, 2011Centre for Clinical Ethics, Ethics Grand Rounds “The Physician Investigator: One Head, Two Hats” Giles Scofield, JD, MA (Religion)

12 noon to 1:00 p.m., 2 Bond, 2010, The Paul & Ev-elyn Higgins Conference Room

April 10 2011Rabbi Arthur N. Bielfeld Lecture “Facing Death: How Shall We Live?” Lawrence Librach MD, CCFP, FCFP, Director, Temmy Latner Centre For Palliative Care, Mt. Sinai Hospital

7:30 pm, Temple Emanu-El, 120 Old Colony Road, Toronto. Free Admission and Parking. Doors Open at 7 pm. RSVP by April 4th 416-449-3880 or [email protected]

http://www.templeemanuel.ca/images/uploads/Beil-feld_Lecture.pdf

April 12, 2011Centre for Clinical Ethics, Ethics Grand Rounds “Engaging Mental Health Issues: Myths, Mysteries? and Sometimes Mayhem” Kevin Rodrigues, Fellow, Centre for Clinical Ethics

12 noon to 1 p.m., Providence Healthcare, Montcalm Conference Centre, Room CC-301

April 21, 2011Bioethics Grand Rounds “What’s new in the new Tri Council Policy Statement? What are the implica-tions for Research Ethics in Canada?” Nancy Walton, PhD, Chair, Ryerson University Research Ethics Board; Richard Sugarman, MSW RSW, Chair, SickKids Re-search Ethics Board

12:00 Noon to 1:00 p.m., Room 1250 Burton Wing, The Hospital for Sick Children

April 27, 2011The Centre for Addiction and Mental Health Brown Bag Research Ethics Discussion Groups “Ethical Issues in Community Based Research with Marginalized Newcomer Communities” Yogendra B. Shakya, PhD, Senior Research Scientist, Access Alli-ance Multicultural Health and Community Services

12:00pm – 1:00pm. Room 2015 (ELCLC), 33 Rus-sell Street, 2nd Floor. Bring your own lunch. Contact [email protected] for questions.

May 12-14, 2011Fifth JEMH Conference on Ethics in Mental Health “Ethical Challenges in Service Delivery and Design” Kelowna, BC

Speakers include:“Blaming and Stereotyping and Their Effects on •Healing from Borderline Personality” Nancy Ny-quist Potter (Keynote), Professor, Department of Philosophy Core Faculty, Interdisciplinary M.A. in Bioethics and Medical Humanities. University of Louisville, KY“The Role of Public Health in Mental Health” •Bernard M. Dickens (Keynote), Professor Emeri-tus Faculty of Law, Faculty of Medicine and Joint Centre for Bioethics; Co-Director, International Reproductive and Sexual Health Law Programme, University of Toronto“Ethical Issues Related to Pragmatic Design Trials •in Mental Health - The At Home Chez Soi Project” Diego Silva, Doctoral Student, Collaborative Pro-gram in Bioethics, Joint Centre for Bioethics

http://www.jemh.ca/conferences/2011/index.html

Cancelled

Page 17: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 17

Seminars, Events & Conferences

May 4, 2011 “The Ethics of Ghost Authorship in Biomedical Research: Concerns and Remedies” Workshop

Speakers and commentators include Mario Biagioli, An-Wen Chan, Jocalyn Clark, Raymond Devries, Carl Elliott, Bijan Esfandiari, Lorraine Ferris, Adriane Fugh-Berman, David Healy, David Korn, Linda Logdberg, Trudo Lemmens, Alastair Matheson, David McKnight, Harriet Rosenberg, Sergio Sismondo, Simon Stern, Paul Thacker and Ross Upshur.

The event is sponsored by: the Centre for Ethics; the Centre for Innovation, Law and Policy; the Joint Cen-tre for Bioethics; and the Faculty of Law of the Uni-versity of Toronto, as well as by a research grant from the Social Sciences and Humanities Research Council on the Ethics of Biomedical Research.

Participation is free but registration is required. The audience is limited to 50 people and registrations will be taken until the limit is achieved. People will only be admitted if registered. A limited number of places is available for students.

For registration contact Tara Park at [email protected], with your name, professional affiliation, address, phone number, and e-mail address.

Registration deadline: April 22nd

From 8:30 am to 5:15 pm, FLA (Classroom A), Fla-velle House, 78 Queen’s Park Avenue, Faculty of Law, University of Toronto

http://www.law.utoronto.ca/visitors_content.asp?itemPath=5/7/3/0/0&contentId=2130

June 2-4, 2011Canadian Bioethics Society 22nd Annual Conference “Excellence in Health Care: Meeting the Challenges of Sustainability”Saint John, New Brunswick

The conference will bring together bioethicists, health-care professionals and leaders, researchers, students and other interested individuals to discuss and dis-seminate research and evidence toward achieving a healthcare system from health policies which are both sustainable, and ethical.

With over 60 presentations, the conference will ap-proach the issue of sustainability from an interdisci-plinary perspective. Plenary sessions will centre on the economic, clinical and bioethics perspectives of sustainability.

Important Dates:April 11, 2011 - Announcement of selected oral ▪and poster presentationsApril 15, 2011 - Detailed conference schedule ▪available on the websiteApril 30, 2011 - Early-Bird Registration ▪Deadline

Conference Fees:CBS Member $445.00 until April 30, 2011 - ▪$495.00 after April 30, 2011Non-CBS Member $545.00 until April 30, 2011 - ▪$595.00 after April 30, 2011Student CBS Member – fee waived ▪Student Non-CBS Member – fee waived ▪

Registration is now open. To Register, go to:http://www.regonline.ca/22ndcanadianbioethicssocietyannualconference

http://www.cbssaintjohn2011.org/index.html

Page 18: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 18

Seminars, Events & Conferences

• Call for Participants •UNESCO Ethics Teacher Training Courses Summer 2011

Two Ethics Teacher Training Courses will be held at the beginning of this summer. One of the courses will take place at the Serbian Academy of Sciences and Arts in Belgrade (Serbia) from 27 June to 1 July 2011. The other course will be hosted by the Inter-University Center in Dubrovnik (Croatia), from 4 to 8 July 2011.

The courses have been designed to provide training to ethics teachers with the purpose to enhance their skills and abilities. The courses will be conducted by a team of experts with extensive international ex-perience in ethics education, including Dr. Henk ten Have, Director of the Center for Healthcare Ethics at Duquesne University, Pittsburgh, United States of America; Dr. Amnon Carmi, UNESCO Chair in Bioeth-ics, University of Haifa, Israel; and Dr. Daniella Keidar,

from the International Center for Health, Law and Eth-ics, Faculty of Law, University of Haifa, Israel.

Participants should have a Master’s degree (in areas such as law, medicine, philosophy, ethics, or social sciences), preferably hold a University faculty appoint-ment to teach courses, and have good command of English language.

Persons who want to register should submit a regis-tration form to Irakli Khodeli ([email protected]) at the Bioethics Section of UNESCO before 2 May 2011. Applicants should also include a letter of moti-vation (2 pages) in English explaining why they wish to participate in the course and how they expect to benefit from participating.

http://www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/sv0/news/call_for_partici-pants_ethics_teacher_training_course_in_june_2011/

Join Us on Wednesdays3:10 to 4:30 p.m.

The Joint Centre for Bioethics155 College St.7th Floor, Suite 754

JCB Seminar Series

Go to: http://www.jointcentreforbioethics.ca/tools/seminars.shtml for upcoming seminar info.

Page 19: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 19

As part of the National 2011 Conference, the Canadian Association for Spiritual Care invites Healthcare professionals:

Caring for patients who are seriously ill•Committed to addressing patients’ spiritual, as well as physical and emotional needs•Physicians, nurses, social workers, counselors, hospice workers, allied health profes-•sionals, clergy and healthcare students.

To the

The Palliative Care and Spirituality Education Day

Seminars, Events & Conferences

To register online for a full or half-day, go to:https://www.regonline.com/casc_conference_2011_to-ronto

As a registration type, select one of the following two options:

Wednesday Pre-Conference ▫Full Day With Lunch (Education Day for Physicians, RNs, Allied Health): CDN$150.00Wednesday Pre-Conference ▫Half Day (Education Day for Physicians, RNs, Allied Health): CDN$60.00

April 13, 2011Delta Chelsea Hotel, Toronto

33 Gerrard Street WestToronto, Ontario M5G 1Z4

Page 20: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 20

Seminars, Events & Conferences

Dear Colleague:

We are delighted to announce that the Clinical Ethics Summer Institute (CESI 2011) will be held at Trillium Health Centre in Mississauga on July 5th and 6th, 2011. We hope that the new location and 2-day format will provide greater convenience and accessibility for those interested in attending.

Following our successful 2009 program, we considered the feedback we received from attendees carefully with particular attention to requests for future topics. For many of our past participants finding ways to address moral distress, enhancing ethics programs across organizations and measuring program effectiveness were significant areas of interest. Therefore the theme for CESI 2011 is “Ethics--More than Window Dressing.”

The CESI Organizing Board has crafted a program that provides a hands-on, interactive learning environment where you will strengthen your ethics capacity, develop strategies to build your ethics program and become better equipped to help lead ethics activities in your organization.

We are very excited that two of our past keynote presenters, Dr. George Webster and Dr. Jennifer Gibson, have agreed to return as guest faculty. And, we are thrilled that Dr. Michele Chaban will be making her CESI debut.

For more information and to register, please visit the Clinical Ethics Summer Institute website at: http://www.clinicalethics.ca

We look forward to seeing you in July!

Best Regards,

Paula Chidwick, Karen Faith, Andrea Frolic, Dianne Godkin, Laurie Hardingham

CESI Organizing Board Members

Page 21: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 21

Seminars, Events & Conferences

• Membership •Canadian Coalition for Global Health Research

An invitation to the University of Toronto global health community to join the Canadian Coalition for Global Health Research.

The CCGHR is a not-for-profit organization promoting better and more equitable health worldwide through the production and use of knowledge.

Current members include:

Individual global health researchers, students and •the general public from Canada and LMICsIndividuals and organizations actively engaged in •applying and funding research to improve global healthUniversities • Please note that University of Toronto holds an institutional membership (2011) spon-sored by the McLaughlin-Rotman Centre for Global Health.

The Coalition began in 2001 as an informal network and has evolved through generous support from the Canadian International Development Agency, the Ca-nadian Institutes of Health Research, Health Canada, the International Development Research Centre and other foundations. The Coalition is a registered Cana-dian charity and is governed by a volunteer Board of Directors.

Your CCGHR membership will include you in a coali-tion of over 1400 people across 80 countries and allow you to:

access to the CCGHR Funding Road Map, which •contains information on resources for global health projects

be eligible to vote in all CCGHR Board Elections•post and update your Membership Profile;•see other CCGHR Member Profiles and network •with themregister for CCGHR-hosted events;•participate in or initiate forums with other mem-•bers; comment on blogsreceive CCGHR e-Bulletins and newsletter•

Membership levels in CAD per year are: Free - Member from Low and Middle Income Countries$95 - Regular$35 - Retired $35 - Student

CCGHR membership available from: http://ccghr-ccrsm.memberlodge.com/join

Information from: [email protected]

The UofT-CCGHR Liaison Group

Deb Cameron, Assistant Professor and International Fieldwork Coordinator, Department of Occupational Science and Occupational Therapy, Faculty of Medicine

Sarah Jane Steele (Taleski), PhD Candidate, Epidemi-ology, Dalla Lana School of Public Health

Judy Kopelow, Director Strategic Initiatives, Centre for International Health, Dalla Lana School of Public Health

Page 22: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

April 2011 / Vol. 16 / No. 8 Page: 22

Recent Publications

Benatar SR. [Review of the book The Deadly Ideas of Neoliberalism: How the IMF undermined Public Health and the fight against AIDS, by Rick Rowden, Zed Books London New York 2009.] Developing World Bioethics. 2011: 11 (1) 55-56.

Benatar, SR, Gill S, Bakker IC. Global health and the global economic crisis. American Journal of Public Health 2011; 101(4): 646-653.

Bhan A, Desikan P, Swarnalakshmi S, Kalantri SP. Process, pitfalls and probity: sharing experiences on setting up and running ethics committees in India. Indian J Med Ethics 2010; 7(1): 48-51.

Bhan A. Use of blanket consent for retrospective research in academic institutions: need for scrutiny and integrating safeguards. Indian J Med Ethics 2010; 7(1): 51-3.

Bhan A. Globalizing the rot within. Indian J Med Eth-ics 2010; 7(2): 124.

Bhan A, Singer PA, Daar AS. Human-animal chime-ras for vaccine development: an endangered species or opportunity for the developing world? BMC Inter-national Health and Human Rights 2010; 10:8.

Bhan A. Ethical Issues Arising in Responding to Di-sasters: Need for a Focus on Preparation, Prioritisation and Protection. Asian Bioethics Review 2010; 2(2): 143-7.

Bhan A. Ethical considerations in developing a nation-al vaccine policy. Indian J Med Res 2010; 132: 226-7.

Canadian Institutes of Health Research. Pro-ceedings of the Canadian Pandemic Preparedness Meeting: Outcomes, Impacts and Lessons Learned. http://www.cihr.gc.ca/e/documents/report_43233_e.pdf. Accessed March 24, 2011.

Da Silva M, Zlotnik Shaul R, Kim CC, et al. Re-cruiting One’s Own Patients for Research: Consent Challenges for Paediatric Physician-Researchers. Health Law in Canada 2011 Feb; 72-80.

Lavery JV. How Can Institutional Review Boards Best Interpret Preclinical Data? PLoS Medicine 2011; 8(3): e1001011.

McMahon DS, Singer PA, Daar AS, Thorsteins-dóttir H. Regenerative medicine in Brazil: small but innovative. Regenerative Medicine 2010 Nov; 5(6): 863-76.

The JCB is pleased to present the report “Working for an Ethical Future: The First Decade of the University of Toronto Joint Centre for Bioethics.” If you would like copies of the report mailed to you, please send an email request (including your mailing address) to [email protected]. Alter-natively, copies can be picked up at the JCB, 155 College Street, Toronto.

Page 23: Feature: Ethical Issues Associated with Biobanks In This Issue A · April 2011 / Vol. 16 / No. 8 Page: 2 Feature: Ethical Issues Associated with Biobanks (cont’d) The TCPS2 outlines

The purpose of this newsletter is to facilitate communication among people interested in bioethics throughout the Joint Centre for Bioethics, participating institutions and elsewhere. The newsletter is published and distributed by email at the beginning of each month. If you would like to receive the news-letter, please contact:

Editor: Na Young LeeEmail: [email protected]: (416) 978-1911

The Joint Centre for Bioethics (JCB) is a partnership among the University of Toronto; Baycrest Centre for Geriatric Care; Centre for Addiction and Mental Health; Centre for Clinical Ethics, a joint venture of Providence Centre, St. Joseph’s Health Centre, and St. Michael’s Hospital; Holland Bloorview Kids Rehabilitation Hospital; The Hospital for Sick Children; Humber River Regional Hospital; Mount Sinai Hospital; North York General Hospital; Sunnybrook Health Sciences Centre; Toronto Community Care Access Centre; Toronto Rehabilitation Institute; Trillium Health Centre; and University Health Network.

The University of Toronto Joint Centre for Bioethics

Submissions to the newsletter must be made by the 20th of the preceding month.Previous issues of the newsletter are posted on our website at:

http://www.jointcentreforbioethics.ca/enewsletter/enewsletter.shtml

Joint Centre for BioethicsUniversity of Toronto155 College Street, Suite 754Toronto, Ontario M5T 1P8 Canada

Phone: (416) 978-2709Fax: (416) 978-1911Email: [email protected]: http://www.jointcentreforbioethics.ca/

April 2011 / Vol. 16 / No. 8 Page: 23

Submission & Contact Information