Conference Presentations by Daryl Pullman
On October 22, IPinCH is hosting a half-day public symposium on DNA and Indigeneity: The Changing... more On October 22, IPinCH is hosting a half-day public symposium on DNA and Indigeneity: The Changing Role of Genetics in Indigenous Rights, Tribal Belonging, and Repatriation. The event will bring together an international and interdisciplinary group of archaeologists, anthropologists, bioethicists, geneticists, and representatives from Indigenous organizations to explore the promise and perils of using biological and genetic information to inform understandings of Indigenous identity. This is an important issue to consider, as scientific pronouncements about identity claims may have profound social, cultural, political, and economic implications for Indigenous peoples. The symposium will be followed by a two-day workshop (by invitation) at the Morris J. Wosk Centre for Dialogue in which three key topics will be discussed: 1) DNA and the Repatriation of Human Remains; 2) Genetics and Identity Based Rights; and 3) DNA and Tribal Belonging.
Videos and Podcasts by Daryl Pullman
Drawing on some recent cases from Newfoundland and Labrador (e.g. repatriation of Beothuk remains... more Drawing on some recent cases from Newfoundland and Labrador (e.g. repatriation of Beothuk remains; membership in the Qalipu Mi’kmaq ‘landless’ tribe), this presentation explores differing notions of identity (e.g. genetic, cultural, and otherwise) as well as various conceptions of justice (distributive, compensatory, retributive, restorative) relating them to issues of repatriation, tribal identity, and land claims.
Dr. Daryl Pullman is Professor of Medical Ethics at Memorial University of Newfoundland, and an IPinCH research team member.
This talk was presented at the DNA and Indigeneity Public Symposium, held on Oct 22, 2015, at SFU Harbour Centre in Vancouver, British Columbia.
Papers by Daryl Pullman
Genetics in Medicine, Dec 1, 2009
Arrhythmogenic right ventricular cardiomyopathy, a lethal autosomal dominant cause of sudden card... more Arrhythmogenic right ventricular cardiomyopathy, a lethal autosomal dominant cause of sudden cardiac death in young people, is prevalent in Newfoundland and Labrador (genetic subtype ARVD5). In the absence of implantable cardioverter defibrillator treatment, death rates are extremely high. Research into arrhythmogenic right ventricular cardiomyopathy (ARVD5) began in the 1980s and the causative gene and mutation were discovered in 2008. The decades of research highlighted major issues associated with the ethical management of genetic information and the translation of research findings to clinical care. We describe these issues and the strategies used in managing them. Effective knowledge transfer of the research information has resulted in systematic clinical and genetic screening coupled with genetic counseling and treatment for at-risk family members. Improved survival for patients has been one clear result of this strategy. Optimal care of families where individuals are at-high risk of inheriting a disease with high morbidity and mortality requires the full integration of both genetic research and clinical genetics programs. Although yet to be fully effected in our setting, our discussion highlights both the ethical necessity as well as some practical barriers in realizing this outcome. Genet Med 2009:11(12):859 -865.
Journal of Clinical Ethics, Sep 1, 2005
American Journal of Bioethics, Apr 25, 2016
Drawing on some recent cases from Newfoundland and Labrador (e.g. repatriation of Beothuk remains... more Drawing on some recent cases from Newfoundland and Labrador (e.g. repatriation of Beothuk remains; membership in the Qalipu Mi’kmaq ‘landless’ tribe), this presentation explores differing notions of identity (e.g. genetic, cultural, and otherwise) as well as various conceptions of justice (distributive, compensatory, retributive, restorative) relating them to issues of repatriation, tribal identity, and land claims. Dr. Daryl Pullman is Professor of Medical Ethics at Memorial University of Newfoundland, and an IPinCH research team member.&nbsp
Methods in molecular biology, 2021
ELSI (Ethical, Legal, and Social Issues) is a widely used acronym in the bioethics literature tha... more ELSI (Ethical, Legal, and Social Issues) is a widely used acronym in the bioethics literature that encompasses a broad range of research examining the various impacts of science and technology on society. In Canada, GE3LS (Genetics, Ethical, Economic, Environmental, Legal, Social issues) is the term used to describe ELSI studies in the context of genetics and genomics research. It is intentionally more expansive in that GE3LS explicitly brings economic and environmental issues under its purview. ELSI/GE3LS research is increasingly relevant in recent years as there has been a greater emphasis on "translational research" that moves genomic discoveries from the bench to the clinic. The purpose of this chapter is to outline a range of ELSI-related work that might be conducted as part of a large scale genetics or genomics research project, and to provide some practical insights on how a scientific research team might incorporate a strong and effective ELSI program within its broader research mandate. We begin by describing the historical context of ELSI research and the development of GE3LS research in the Canadian context. We then illustrate how some ELSI research might unfold by outlining a variety of GE3LS research questions or content domains and the methodologies that might be employed in studying them. We conclude with some practical suggestions about how to build an effective ELSI/GE3LS team and focus within a broader scientific research program.
The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusias... more The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy. The Perspective section provides experts with a forum to comment on topical or controversial issues of broad interest.
PubMed, 2005
Introduction For the past several years the province of Newfoundland and Labrador has been taking... more Introduction For the past several years the province of Newfoundland and Labrador has been taking halting steps to introduce the legislative mechanisms necessary to establish a Provincial Health Research Ethics Board (PHREB). If and when that legislation is in place the PHREB will be responsible for the governance of all health research involving human subjects conducted in the province. However, the process has not been without its difficulties. In what follows I summarize briefly some of the circumstances that led to this provincial initiative, some of the steps and missteps that have occurred so far, and identify some lessons learned as we continue to struggle forward in this regard. Before embarking on this brief review, however, it is worth pausing for a moment to reflect on some reasons as to why lessons learned in Newfoundland and Labrador might be important to the rest of the country. Why Newfoundland and Labrador? Several reasons can be given as to why a Newfoundland and Labrador case study might prove instructive. First, if the PHREB initiative is successful, Newfoundland and Labrador will be the first jurisdiction in Canada to establish in law a comprehensive governance structure for all health research involving human subjects. The precedent setting nature of this initiative makes it interesting in and of itself. Second, Newfoundland and Labrador can serve as a microcosm of the systemic problems that might be encountered in other Canadian jurisdictions. The population of Newfoundland and Labrador is small (just over 500,000), the majority of health researchers in the province are located in the province's single university, and the amount of health research conducted in the province is relatively small. On the face of it then, it would seem that efforts to establish a comprehensive governance structure should be less onerous in Newfoundland and Labrador than might be experienced in jurisdictions that include more institutions, more research, and a greater number of competing interests. Indeed, there has been broad general support for the PHREB initiative in all quarters. Nevertheless, we are still without legislation in spite of four years of concerted effort. The reasons for this failure may prove instructive. Finally, Newfoundland and Labrador might serve as a test case for the country with regard to research governance, similar to the manner in which Saskatchewan was a test case with regard to comprehensive health insurance. When Saskatchewan demonstrated that comprehensive health insurance was a realistic possibility the federal government came on board and other jurisdictions followed suit. If Newfoundland and Labrador can demonstrate that a comprehensive, effective, and efficient system of governance for health research is possible, similar results at the national level may ensue. Conversely, if the practical problems of implementation are insurmountable here, it does not bode well for a larger national initiative. Background Circumstances Memorial University of Newfoundland is the only university in the province. With a Faculty of Medicine, a large Faculty of Arts, and Schools of Nursing, Pharmacy, and Social Work, among others, this institution houses the vast majority of investigators involved in health related research in the province. However, it wasn't the activities of university based researchers or even those of other non-affiliated researchers in the province that served as the impetus to establish the PHREB. Rather, it was concern about the activities of outside researchers who have been visiting the province to conduct their studies. Occasionally these investigators have collaborated with local researchers either formally or informally. However, in some cases they visited communities to collect biological samples, health records and related data, and returned to their home institutions. (1) At times it was only when research results were published or when the national media reported an interesting study that had been conducted in the province, that local researchers and health officials learned of the existence or nature of this research. …
PubMed, Feb 1, 1996
Background: The structural nature of the optometric profession requires that the majority of opto... more Background: The structural nature of the optometric profession requires that the majority of optometrists act both as professional health care providers and as entrepreneurial business persons. Clients in turn act both as patients seeking professional health care and as consumers who need to purchase ophthalmic products. Methods/results: The development of the current structural nature of optometry is examined, and the concomitant moral implications and responsibilities that emerge out of the role conflicts experienced by both practitioner and patient are explained. Inasmuch as the optometrist's relationship to the patient can at times be ambiguous, the optometrist can be put in a conflict-of-interest situation. Conclusions: It is the optometrist's moral responsibility to endeavor to avoid conflict-of-interest situations, or to clarify or change them when they occur.
University of Toronto Press eBooks, Dec 31, 2018
Public Health Ethics, May 4, 2019
Newborn bloodspot screening programs are some of the longest running population screening program... more Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents (n = 32), healthcare professionals (n = 19) and policy decision makers (n = 17) in two Canadian provinces. Conceptions of consentrelated terms revolved around seven factors within two broad domains, decision-making and information attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities (including disclosure of information and time to review); parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs. Research Highlights Current lack of attention given to meaning of consent-related terminology. The meaning of consent-related terminology varies among stakeholders. Meanings of consent-related terms come with practical implications. Identifies seven key factors that distinguish meaning of consent-related terminology.
Journal of Bioethical Inquiry, Oct 8, 2010
Feticide, the practice of terminating the life of an otherwise viable fetus in utero, has become ... more Feticide, the practice of terminating the life of an otherwise viable fetus in utero, has become an increasingly common practice in obstetric centres around the globe, a concomitant of antenatal screening technologies. This paper examines this expanding practice in light of the concept of human dignity. Although it is assumed from the outset that even viable human fetuses are not persons and as such do not enjoy full membership in the moral community, it is argued that the fact that these are nevertheless human fetuses affords them prima facie moral status. Thus even those who accept a liberal position with regard to therapeutic abortion, should be concerned about these more recent developments. Indeed, how we treat viable human fetuses has implications for our prospective treatment of other human non-persons and could undermine the common human dignity we all share.
Public Health Genomics, 2021
Introduction: The growth of global sequencing initiatives and commercial genomic test offerings s... more Introduction: The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies. Methods: A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items. Results: While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemo-graphic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes. Conclusions: Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required.
American Anthropologist, Nov 22, 2017
The Beothuk of Newfoundland and Labrador have been extinct since the early nineteenth century, bu... more The Beothuk of Newfoundland and Labrador have been extinct since the early nineteenth century, but skeletal remains of twelve Beothuk individuals are in storage at Memorial University in St. John's, Newfoundland, and those of another ten are in the archives of the Canadian Museum of History in Gatineau, Quebec. However, the best-known and most widely discussed Beothuk remains reside in the stores of the National Museum of Scotland in Edinburgh. These are the skulls of Nonosabasut and his wife Demasduit, both of whom came to untimely ends through contact with European colonizers. In recent years, efforts have been made to repatriate these skulls to Newfoundland and Labrador. However, Canada has no equivalent legislation to the US NAGPRA, which provides direction with regard to "unaffiliated remains." Who then speaks for the Beothuk? This article explores some of the ethical and legal challenges associated with repatriating the remains of now-extinct peoples, especially when those remains reside in a foreign territory. The ongoing ethical tension between the interests of science and those of justice are addressed, and a compromise solution is proposed. [bioarchaeology, bioethics, repatriation, justice, Beothuk] RESUMEN Los beothuk de Terranova y Labrador han estado extintos desde principios del siglo XIX, pero los restos esqueléticos de 12 individuos beothuk están almacenados en Memorial University en St. John's, Terranova, y aquellos de otros 10 están en los archivos del Canadian Museum of History en Gatineau, Quebec. Sin embargo, los restos beothuk mejor conocidos y más ampliamente discutidos residen en los depósitos del National Museum of Scotland en Edimburgo. Estos son los cráneos de Nonosabasut y su esposa Demasduit, ambos de los cuales llegaron a fines intempestivos mediante el contacto con los colonizadores europeos. En años recientes, esfuerzos han sido hechos para repatriar estos cráneos a Terranova y Labrador. Sin embargo, Canadá no tiene una legislación equivalente a la NAGPRA de los Estados Unidos, la cual provee dirección con respecto a los "restos no afiliados". ¿Quién habla entonces por los beothuk? Este artículo explora algunos de los retoséticos y legales asociados con la repatriación de los restos de personas ahora extintas, especialmente cuando esos restos residen en un territorio extranjero. La tensiónética en curso entre los intereses de la ciencia y aquellos de la justicia son abordados y una solución de compromiso es propuesta. [bioarqueología, bioética, repatriación, justicia, beothuk]
Journal of the American Medical Informatics Association, 2013
Objective To provide a legal and ethical analysis of some of the implementation challenges faced ... more Objective To provide a legal and ethical analysis of some of the implementation challenges faced by the Population Therapeutics Research Group (PTRG) at Memorial University (Canada), in using genealogical information offered by individuals for its genetics research database. Materials and methods This paper describes the unique historical and genetic characteristics of the Newfoundland and Labrador founder population, which gave rise to the opportunity for PTRG to build the Newfoundland Genealogy Database containing digitized records of all pre-confederation (1949) census records of the Newfoundland founder population. In addition to
PubMed, 2001
I. Introduction The history of modern research ethics can be traced to the ten articles of the Nu... more I. Introduction The history of modern research ethics can be traced to the ten articles of the Nuremberg Code, a response to the atrocities that Nazi physicians had perpetrated upon their hapless victims in so-called "medical experiments." Informed consent to research was the first and most prominent of those ten articles. In spite of this attempt to regulate human subjects research, however, some twenty years later Dr. Henry K. Beecher published a critical survey of twenty-two research projects conducted in the United States in the years subsequent to Nuremberg. (1) Beecher observed that in the vast majority of cases research subjects were never adequately apprised of the nature of the research conducted upon them. He reiterated the need for informed consent as a necessary component of morally acceptable research on human subjects. At the same time, however, he acknowledged that in practice it is often difficult to obtain adequately informed consent. Hence Beecher insisted on a second component in order for patients to be s afeguarded in the research process, namely "intelligent, informed, conscientious, compassionate, responsible investigators." (2) There can be no doubt that the conduct of ethical research rests ultimately in the hands of persons of integrity. Yet Beecher's own investigations indicated that we would be foolish to assume this high standard is always or usually attained. In the years subsequent to Beecher's article a consensus has emerged that independent review of proposed research on human subjects is essential. This is the position set forth in the World Medical Association's Declaration of Helsinki, (3) and it serves as the historical basis of the contemporary Research Ethics Board (REB). Prior review by a duly constituted committee has become the ethical sine qua non of modem human subjects research. Despite the widespread implementation of REB review, however, difficulties persist with regard to the matter of ensuring informed consent on the part of prospective research subjects. (4) The 1980 Supreme Court decision in Reibl v. Hughes (5) established the Canadian standard for informed consent to therapeutic treatment. However, the leading Canadian case for consent in the context of research and experimentation was established some 15 years earlier in Halushka v. University of Saskatchewan et al. (6) In Halushka Justice Hall argued that the duty owed by researchers toward prospective subjects is greater than that owed by medical practitioners to their patients. (7) A stricter standard of disclosure in the research context is now generally accepted in law. (8) To quote one authority on the subject, it is "the most exacting duty possible, requiring 'full and frank disclosure' of all risks, no matter how remote or how rare." (9) Canadian legal (10) and ethical (11) commentators continue to cite Halushka as the leading case on informed consent to research. This is understandable in that it is one of the few cases of this nature that has made its way through the courts. (12) It is also the case that established that the standard for consent to research is stricter than that applied to therapy. However, it can be argued that Halushka in fact invoked a weaker standard of informed consent than that which was later applied in Reibi v. Hughes. Since so much commentary on consent to research continues to invoke Halushka, it is necessary to examine what this judgment did in fact establish, how it is related to the later judgment in Reibl, and to consider the combined implications of these and subsequent cases for consent to research. This paper considers what can be learned from Halushka v. University of Saskatchewan, Reibl v. Hughes and subsequent decisions (13) with regard to consent to participate in clinical trials. In particular it is argued that the standard of information disclosure utilized currently in many clinical trials fails to meet the strict standard set in Reibl v. …
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Conference Presentations by Daryl Pullman
Videos and Podcasts by Daryl Pullman
Dr. Daryl Pullman is Professor of Medical Ethics at Memorial University of Newfoundland, and an IPinCH research team member.
This talk was presented at the DNA and Indigeneity Public Symposium, held on Oct 22, 2015, at SFU Harbour Centre in Vancouver, British Columbia.
Papers by Daryl Pullman
Dr. Daryl Pullman is Professor of Medical Ethics at Memorial University of Newfoundland, and an IPinCH research team member.
This talk was presented at the DNA and Indigeneity Public Symposium, held on Oct 22, 2015, at SFU Harbour Centre in Vancouver, British Columbia.