Papers by Dominique Martin
Background Clinical research is increasingly being undertaken in primary care settings. This deve... more Background Clinical research is increasingly being undertaken in primary care settings. This development offers both benefits and challenges. The ethical challenges of occupying the roles of both clinician and researcher may be accentuated in primary care settings, where relationships are longer-lasting and medical conditions are less acute. This paper examines primary care physicians' experiences of undertaking research, particularly their decision-making about recruiting patients in the context of their own dual roles. Methods This project comprised in-depth interviews with eight Australian primary care physicians working in general or specialist practices that were involved in clinical research. Data were analyzed using inductive thematic analysis. Results Physicians involved in recruiting their patients into clinical trials acted as gate-keepers; they were selective about which patients to recruit and did not necessarily approach all patients who met the research eligibility criteria. Physicians' accounts suggested they prioritized their clinician role over their researcher role. In addition to the rigor and merit of the research, physicians considered the possible benefit of trial participation for individual patients. Physicians described making recruitment decisions based on their perceived knowledge of patients' personal, behavioural, and attitudinal characteristics – often derived from their long-standing relationships with their patients. Conclusion Our data shows evidence of gate-keeping by primary care physicians when deciding to participate in, and recruit their patients to, clinical studies. We argue that such gate-keeping is a way of addressing the dual and sometimes conflicting roles of clinician and researcher. It need not be ethically problematic, but primary care physicians should be reflexive about their recruitment practices and biases. In addition, this form of gate-keeping should be explicitly recognized in protocol design and the analysis of trial findings.
Treatment for end-stage kidney disease is a major economic challenge and a public health concern ... more Treatment for end-stage kidney disease is a major economic challenge and a public health concern worldwide. Renal-replacement therapy poses several practical and ethical dilemmas of global relevance for patients, clinicians, and policy makers. These include how to: promote patients' best interests; increase access to dialysis while maintaining procedural and distributive justice; minimise the infl uence of fi nancial incentives and competing interests; ensure quality of care in service delivery and access to non-dialytic supportive care when needed; minimise the fi nancial burden on patients and health-care system; and protect the interests of vulnerable groups during crisis situations. These issues have received comparatively little attention, and there is scant ethical analysis and guidance available to decision makers. In this Health Policy, we provide an overview of the major ethical issues related to dialysis provision worldwide, identify priorities for further investigation and management, and present preliminary recommendations to guide practice and policy.
Medical products of human origin (MPHOs) are ‘substances derived wholly or in part from human bio... more Medical products of human origin (MPHOs) are ‘substances derived wholly or in part from human biological materials and intended for clinical application’. In 2014, the World Health Organization launched an Initiative for MPHOs. One of the primary goals of this Initiative is to establish global consensus on core principles that should guide policies and practices involving MPHO, particularly with regard to the procurement, distribution and use of these products. Like any medical products with therapeutic value for humans, the sufficiency of their supply, risks and benefits for recipients and equity in their allocation present ethical concerns for health policymakers, professionals and patients. Unlike other medical products, however, MPHOs present additional ethical concerns because their source materials are procured from living or deceased human beings. The clinical and psychosocial risks and benefits of donating specific materials for use in MPHOs vary according to characteristics of the donor, the material procured and the procurement process used. Risks and benefits, for example, continue to evolve as new procurement technologies, standards of donor care, and new donor populations emerge. Nevertheless, several core ethical concerns remain constant, distinguishing MPHOs as ‘exceptional’ health products. They include concerns about care of donors, inequities in donation and commercialization of ‘donation’ and MPHOs. In this article, I explore some major donor-related ethical concerns and argue that these provide a rationale for seeking to establish global consensus on ethical governance of all MPHOs, and a foundation for consensus on issues of donor care, and equity in donation and allocation of these exceptional health products.
Global Bodies in Grey Zones, Sep 2016
Stem cell "tourism" is often portrayed as the domain of lone patients desperately seeking cures a... more Stem cell "tourism" is often portrayed as the domain of lone patients desperately seeking cures abroad, guided only by their independent internet searches. While there is little doubt that prospective travelers are strongly influenced by direct-to-consumer online advertising and direct liaison with overseas clinics or individual providers, those considering a journey are also being encouraged, counseled, and even referred to providers of unproven stem cell interventions by travel “facilitators" that are variably co-located with providers, part of international consortiums or general medical travel agencies, and even based in the patients' own countries.
We explore here the roles played by stem cell travel facilitators and the ethical issues raised by their involvement in travel for unproven stem cell interventions. Drawing on Australian and international examples, and previous empirical research in the field of stem cell and general medical travel facilitation, we discuss the way that facilitators strive to compensate for information and evidence gaps concerning stem cell interventions so as to reassure prospective patients seeking to evaluate intervention provider options. We suggest that facilitators do so by drawing on traditional paradigms of practice - those of standard medical treatment, clinical research and medical innovation - to present the sale of unproven interventions as safely embedded in professional frameworks and grounded by established science. However, we argue that commercialisation of unproven stem cell interventions is in fact a distinct paradigm lacking many of the safeguards associated with traditional practices and in many cases lacking ethical grounds for implementation.
We contend that stem cell travel facilitators fall within blindspots of regulation, ethical responsibility, and public understanding, and often practice outside customary professional boundaries. In conclusion, we identify a set of core ethical responsibilities of facilitators, focused on their self-identified primary function as supporting informed decision-making by patients, and outline recommendations for their fulfillment.
Governmental and private programs that pay next of kin who give permission for the removal of the... more Governmental and private programs that pay next of kin who give permission for the removal of their deceased rela-tive's organs for transplantation exist in a number of countries. Such payments, which may be given to the relatives or paid directly for funeral expenses or hospital bills unrelated to being a donor, aim to increase the rate of donation. The Declaration of Istanbul Custodian Group—in alignment with the World Health Organization Guiding Principles and the Council of Europe Convention Against Trafficking in Human Organs—has adopted a new policy statement opposing such practices. Payment programs are unwise because they produce a lower rate of donations than in countries with voluntary, unpaid programs; associate deceased donation with being poor and marginal in society; undermine public trust in the determination of death; and raise doubts about fair allocation of organs. Most important, allowing families to receive money for donation from a deceased person, who is at no risk of harm, will make it impossible to sustain prohibitions on paying living donors, who are at risk. Payment programs are also unethical. Tying coverage for funeral expenses or healthcare costs to a family allowing organs to be procured is exploitative, not " charitable. " Using payment to overcome reluctance to donate based on cultural or religious beliefs especially offends principles of liberty and dignity. Finally, while it is appropriate to make donation " financially neutral " —by reimbursing the added medical costs of evaluating and maintaining a patient as a potential donor—such reimbursement may never be conditioned on a family agreeing to donate.
In India, as in most countries where trade in human organs is legally prohibited, policies govern... more In India, as in most countries where trade in human organs is legally prohibited, policies governing transplantation from living donors are designed to identify and exclude prospective donors who have a commercial interest in donation. The effective implementation of such policies requires resources, training and motivation on the part of health professionals responsible for organ procurement and transplantation. If professionals are unconvinced by or unfamiliar with the ethical justification of the relevant laws and policies, they may fail to perform a robust evaluation of prospective donors and transplant candidates, and to act on suspicions or evidence of illicit activities. I comment here on a recent paper by Aggarwal and Adhikary (2016), in which the authors imply that tolerance of illicit commercialism in living kidney donation programmes is not unreasonable, given the insufficiency of kidneys available for transplantation. I argue that such tolerance is unethical not only because of the harmful consequences of kidney trafficking, but because professional tolerance of commercialism undermines public trust in organ procurement programmes and impairs the development of sustainable donation and transplant systems.
Background: We report here selected findings from a mixed-methods study investigating the role of... more Background: We report here selected findings from a mixed-methods study investigating the role of Australian rare disease patient organisations (RDPOs) in research. Despite there being many examples of RDPOs that have initiated and supported significant scientific advances, there is little information – and none at all in Australia – about RDPOs generally, and their research-related goals, activities, and experiences. This information is a pre-requisite for understanding what RDPOs bring to research and how their involvement could be strengthened.
Methods: We reviewed 112 RDPO websites, conducted an online survey completed by 61 organisational leaders, and interviewed ten leaders and two key informants. Quantitative and qualitative data were analysed using basic descriptive statistics and content analysis, respectively.
Results: Although most are small volunteer-based groups, more than 90 % of the surveyed RDPOs had a goal to promote or support research on the diseases affecting their members. Nearly all (95 %) had undertaken at least one research-related activity – such as providing funding or other support to researchers – in the previous five years. However, RDPO leaders reported considerable challenges in meeting their research goals. Difficulties most frequently identified were insufficient RDPO resources, and a perceived lack of researchers interested in studying their diseases. Other concerns included inadequate RDPO expertise in governing research “investments”, and difficulty engaging researchers in the organisation’s knowledge and ideas. We discuss these perceived challenges in the light of two systemic issues: the proliferation of and lack of collaboration between RDPOs, and the lack of specific governmental policies and resources supporting rare disease research and patient advocacy in Australia.
Conclusion: This study provides unique information about the experiences of RDPOs generally, rather than experiences retrospectively reported by RDPOs associated with successful research. We describe RDPOs’ valuable contributions to research, while also providing insights into the difficulties for small organisations trying to promote research. The study is relevant internationally because of what it tells us about RDPOs; however, we draw attention to specific opportunities in Australia to support RDPOs’ involvement in research, for the benefit of current and future generations affected by rare diseases.
Transplantation Journal, 2013
Background: Many nations are able to prosecute transplant-related crimes committed in their terri... more Background: Many nations are able to prosecute transplant-related crimes committed in their territory, but transplant recipients, organ sellers and brokers, and transplant professionals may escape prosecution by engaging in these practices in foreign locations where they judge the risk of criminal investigation and prosecution to be remote.
Methods: The Declaration of Istanbul Custodian Group convened an international working group to evaluate the possible role of extraterritorial jurisdiction in strengthening the enforcement of existing laws governing transplant-related crimes across national boundaries. Potential practical and ethical concerns about the use of extraterritorial jurisdiction were examined, and possible responses were explored.
Results: Extraterritorial jurisdiction is a legitimate tool to combat transplant-related crimes. Further, development of a global registry of transnational transplant activities in conjunction with a standardized international referral system for legitimate travel for transplantation is proposed as a mechanism to support enforcement of national and international legal tools.
Conclusions: States are encouraged to include provisions on extraterritorial jurisdiction in their laws on transplant-related crimes and to collaborate with professionals and international authorities in the development of a global registry of transnational transplant activities. These actions would assist in the identification and evaluation of illicit activities and provide information that would help in developing strategies to deter and prevent them
American Journal of Bioethics 15(8):23-25., Jul 30, 2015
Overby and colleagues (2015) highlight the complexities of consent to or authorization for organ ... more Overby and colleagues (2015) highlight the complexities of consent to or authorization for organ procurement in the setting of controlled donation after circulatory determination of death (cDCDD). They note that decision making about cDCDD is complicated by clinical uncertainties and ethical controversies regarding protocols for the determination of death by circulatory criteria and the use of perimortem interventions to support organ procurement, and that these uncertainties and controversies may be exacerbated in the pediatric context. Suggesting that parents and clinicians may “unconsciously” compromise the best interests of their own children and patients in order to achieve organ procurement goals, Overby and colleagues argue that children are at risk of instrumentalization when the option of cDCDD is presented. This claim is further grounded in their belief that children lack autonomy and can have no interest in becoming organ donors. In this commentary, we contest these assumptions, the implications of which extend beyond cDCDD and threaten to undermine programs of pediatric deceased donation, including donation after the neurologic determination of death (DNDD). We argue that routine consideration of the possibility of organ donation by critically ill children is consistent with respect for children’s best interests and, most importantly, their human dignity.
American Journal of Kidney Disease, Jun 6, 2015
In the face of the perceived failure of altruistic organ donation programs to generate sufficient... more In the face of the perceived failure of altruistic organ donation programs to generate sufficient kidneys to meet demand, introducing financial incentives for living donors is sometimes argued as the only effective strategy by which lives currently lost while awaiting kidney transplantation might be saved. This argument from life-saving necessity is implicit in many incentive proposals, but rarely challenged by opponents. The core empirical claims on which it rests are thus rarely interrogated: that the gap between supply of and demand for donor kidneys is large and growing, the current system cannot meet demand, and financial incentives would increase the overall supply of kidneys and thus save lives. We consider these claims in the context of the United States. While we acknowledge the plausibility of claims that incentives, if sufficiently large, may successfully recruit greater numbers of living donors, we argue that strategies compatible with the existing altruistic system may also increase the supply of kidneys and save lives otherwise lost to kidney failure. We conclude that current appeals to the life-saving necessity argument have yet to establish sufficient grounds to justify trials of incentives.
Authors: DE Martin, TA Nakagawa, MJ Siebelink, KA Bramstedt, J Brierley, F Dobbels, JR Rodrigue, M Sarwal, R Shapiro, B Dominguez-Gil, GM Danovitch, SC Sweet, RS Trompeter, F Moazam, MA Bos, FL Delmonico, May 20, 2015
The Ethics Committee of The Transplantation Society convened a meeting on pediatric deceased dona... more The Ethics Committee of The Transplantation Society convened a meeting on pediatric deceased donation of organs in Geneva, Switzerland, on March 21 to 22, 2014. Thirty-four participants from Africa, Asia, the Middle East, Oceania, Europe, and North and South America explored the practical and ethical issues pertaining to pediatric deceased donation and developed recommendations for policy and practice. Their expertise was inclusive of pediatric intensive care, internal medicine, and surgery, nursing, ethics, organ donation and procurement, psychology, law, and sociology. The report of the meeting advocates the routine provision of opportunities for deceased donation by pediatric patients and conveys an international call for the development of evidence-based resources needed to inform provision of best practice care in deceased donation for neonates and children.
Hepatobiliary Surgery and Nutrition, Apr 2015
American Journal of Transplantation, Mar 31, 2015
The supply of organs—particularly kidneys—donated by living and deceased donors falls short of th... more The supply of organs—particularly kidneys—donated by living and deceased donors falls short of the number of patients added annually to transplant waiting lists in the United States. To remedy this problem, a number of prominent physicians, ethicists, economists and others have mounted a campaign to suspend the prohibitions in the National Organ Transplant Act of 1984 (NOTA) on the buying and selling of organs. The argument that providing financial benefits would incentivize enough people to part with a kidney (or a portion of a liver) to clear the waiting lists is flawed. This commentary marshals arguments against the claim that the shortage of donor organs would best be overcome by providing financial incentives for donation. We can increase the number of organs available for transplantation by removing all financial disincentives that deter unpaid living or deceased kidney donation. These disincentives include a range of burdens, such as the costs of travel and lodging for medical evaluation and surgery, lost wages, and the expense of dependent care during the period of organ removal and recuperation. Organ donation should remain an act that is financially neutral for donors, neither imposing financial burdens nor enriching them monetarily.
New Cannibal Markets: Globalisation and Commodification of the Human Body., Jun 18, 2015
By Luc Noël and Dominique Martin
In Rainhorn JD and El Boudamoussi S (Ed.s). New Cannibal Mark... more By Luc Noël and Dominique Martin
In Rainhorn JD and El Boudamoussi S (Ed.s). New Cannibal Markets: Globalisation and Commodification of the Human Body. pp383-396. Editions Fondations Maison des Sciences de l'Homme, Paris.
Griffith Journal of Law and Human Dignity, 2(2): 293-329, Nov 4, 2014
This paper reviews the policy and practice of organ donation and transplantation in Qatar that ha... more This paper reviews the policy and practice of organ donation and transplantation in Qatar that has developed since January 2011. The important features of the Doha Model (the ‘Model’) are explored, including: (i) all legal residents of Qatar have an equal right to access deceased donor organs and transplantation regardless of their citizenship status; (ii) no prioritisation in organ allocation is given to Qatari citizens; (iii) a multilingual and multicultural education and promotional program about donation has been implemented to engage the diverse national communities resident within Qatar; (iv) financial incentives or fungible rewards for living or deceased donation are prohibited. The ethical framework of this policy will be examined in the light of the national self-sufficiency paradigm, which advocates reciprocity and solidarity among resident populations seeking to meet all needs for transplantation equitably. We review some preliminary evidence of the impact of the Model with respect to engagement of a highly diverse multinational population in a donation and transplantation program, and argue that the Model may inform policy and practice in other countries, particularly those with non-citizen resident populations.
International journal of feminist approaches to bioethics, Vol 7, No 2, pp10-44, 2014
Transnational reproductive travel is symptomatic of insufficient supplies of reproductive resourc... more Transnational reproductive travel is symptomatic of insufficient supplies of reproductive resources, including donor gametes and gestational surrogacy services, and inequities in access to these within domestic health-care jurisdictions.
Here, we argue that an innovative approach to domestic policy making using the framework of the National Self-Sufficiency paradigm represents the best solution to domestic challenges and the ethical hazards of the global marketplace in reproductive resources.
The American Journal of Bioethics 14(10): 46-48, Sep 17, 2014
In his comprehensive review of the hazards of existing, largely unregulated markets in human kidn... more In his comprehensive review of the hazards of existing, largely unregulated markets in human kidneys, Koplin (2014) argues that advocates of regulated markets may underestimate the potential physical, psychosocial and financial harms risked by vendors. He acknowledges, however, that market proponents will likely be undeterred in calling for “trials” or “pilot studies” of financial incentives in developed countries on the grounds that the experience of international black markets is of limited predictive value in anticipating the outcomes of regulated markets. We contend that there is good evidence to support the concern that living vendors would be at higher risk of adverse health outcomes compared to altruistic donors in the context of a regulated market. This has important implications not only for the informed consent of prospective vendors, but also for the potential regulations that would be required to mitigate these risks. We argue here that pilot studies would be at the very least premature until such time as market proponents have sufficiently engaged with potential harms to prospective kidney vendors.
Tribune -newsletter of the Transplantation Society, 2014
Le Courrier de la Transplantation, 14(2): 62-65., Jun 2014
The Declaration of Istanbul Custodian Group (DICG) was established in 2010 to promote the princip... more The Declaration of Istanbul Custodian Group (DICG) was established in 2010 to promote the principles of the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, and to encourage and assist in their implementation in policy and practice throughout the world. In this paper, I review the work undertaken by the DICG and discuss the important and multifaceted role that health professionals must play in efforts to combat organ trafficking. The evolution of transplant “tourism” and the shifting dynamics of the international organ trade present complex challenges, and health professionals are well placed to identify and develop new solutions to these persisting problems.
Le Declaration of Istanbul Custodian Group (DICG) a été formé en 2010 pour promouvoir les principes de la Declaration of Istanbul on Organ Trafficking and Transplant Tourism, et favoriser le transfert de ses préconisations dans les lois et les habitudes professionnelles dans le monde entier. Cette mise au point résume les principes de la Déclaration, et les multiples rôles que doivent jouer les professionnels de santé dans la lutte contre le trafic d’organes et le “tourisme de transplantation”. La mondialisation du commerce et des échanges rend de plus en plus complexe cette lutte. Les professionnels de santé sont en première ligne et ont la responsabilité d’identifier et développer de nouvelles solutions dans cette lutte sans cesse renouvelée.
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Papers by Dominique Martin
We explore here the roles played by stem cell travel facilitators and the ethical issues raised by their involvement in travel for unproven stem cell interventions. Drawing on Australian and international examples, and previous empirical research in the field of stem cell and general medical travel facilitation, we discuss the way that facilitators strive to compensate for information and evidence gaps concerning stem cell interventions so as to reassure prospective patients seeking to evaluate intervention provider options. We suggest that facilitators do so by drawing on traditional paradigms of practice - those of standard medical treatment, clinical research and medical innovation - to present the sale of unproven interventions as safely embedded in professional frameworks and grounded by established science. However, we argue that commercialisation of unproven stem cell interventions is in fact a distinct paradigm lacking many of the safeguards associated with traditional practices and in many cases lacking ethical grounds for implementation.
We contend that stem cell travel facilitators fall within blindspots of regulation, ethical responsibility, and public understanding, and often practice outside customary professional boundaries. In conclusion, we identify a set of core ethical responsibilities of facilitators, focused on their self-identified primary function as supporting informed decision-making by patients, and outline recommendations for their fulfillment.
Methods: We reviewed 112 RDPO websites, conducted an online survey completed by 61 organisational leaders, and interviewed ten leaders and two key informants. Quantitative and qualitative data were analysed using basic descriptive statistics and content analysis, respectively.
Results: Although most are small volunteer-based groups, more than 90 % of the surveyed RDPOs had a goal to promote or support research on the diseases affecting their members. Nearly all (95 %) had undertaken at least one research-related activity – such as providing funding or other support to researchers – in the previous five years. However, RDPO leaders reported considerable challenges in meeting their research goals. Difficulties most frequently identified were insufficient RDPO resources, and a perceived lack of researchers interested in studying their diseases. Other concerns included inadequate RDPO expertise in governing research “investments”, and difficulty engaging researchers in the organisation’s knowledge and ideas. We discuss these perceived challenges in the light of two systemic issues: the proliferation of and lack of collaboration between RDPOs, and the lack of specific governmental policies and resources supporting rare disease research and patient advocacy in Australia.
Conclusion: This study provides unique information about the experiences of RDPOs generally, rather than experiences retrospectively reported by RDPOs associated with successful research. We describe RDPOs’ valuable contributions to research, while also providing insights into the difficulties for small organisations trying to promote research. The study is relevant internationally because of what it tells us about RDPOs; however, we draw attention to specific opportunities in Australia to support RDPOs’ involvement in research, for the benefit of current and future generations affected by rare diseases.
Methods: The Declaration of Istanbul Custodian Group convened an international working group to evaluate the possible role of extraterritorial jurisdiction in strengthening the enforcement of existing laws governing transplant-related crimes across national boundaries. Potential practical and ethical concerns about the use of extraterritorial jurisdiction were examined, and possible responses were explored.
Results: Extraterritorial jurisdiction is a legitimate tool to combat transplant-related crimes. Further, development of a global registry of transnational transplant activities in conjunction with a standardized international referral system for legitimate travel for transplantation is proposed as a mechanism to support enforcement of national and international legal tools.
Conclusions: States are encouraged to include provisions on extraterritorial jurisdiction in their laws on transplant-related crimes and to collaborate with professionals and international authorities in the development of a global registry of transnational transplant activities. These actions would assist in the identification and evaluation of illicit activities and provide information that would help in developing strategies to deter and prevent them
In Rainhorn JD and El Boudamoussi S (Ed.s). New Cannibal Markets: Globalisation and Commodification of the Human Body. pp383-396. Editions Fondations Maison des Sciences de l'Homme, Paris.
Here, we argue that an innovative approach to domestic policy making using the framework of the National Self-Sufficiency paradigm represents the best solution to domestic challenges and the ethical hazards of the global marketplace in reproductive resources.
Le Declaration of Istanbul Custodian Group (DICG) a été formé en 2010 pour promouvoir les principes de la Declaration of Istanbul on Organ Trafficking and Transplant Tourism, et favoriser le transfert de ses préconisations dans les lois et les habitudes professionnelles dans le monde entier. Cette mise au point résume les principes de la Déclaration, et les multiples rôles que doivent jouer les professionnels de santé dans la lutte contre le trafic d’organes et le “tourisme de transplantation”. La mondialisation du commerce et des échanges rend de plus en plus complexe cette lutte. Les professionnels de santé sont en première ligne et ont la responsabilité d’identifier et développer de nouvelles solutions dans cette lutte sans cesse renouvelée.
We explore here the roles played by stem cell travel facilitators and the ethical issues raised by their involvement in travel for unproven stem cell interventions. Drawing on Australian and international examples, and previous empirical research in the field of stem cell and general medical travel facilitation, we discuss the way that facilitators strive to compensate for information and evidence gaps concerning stem cell interventions so as to reassure prospective patients seeking to evaluate intervention provider options. We suggest that facilitators do so by drawing on traditional paradigms of practice - those of standard medical treatment, clinical research and medical innovation - to present the sale of unproven interventions as safely embedded in professional frameworks and grounded by established science. However, we argue that commercialisation of unproven stem cell interventions is in fact a distinct paradigm lacking many of the safeguards associated with traditional practices and in many cases lacking ethical grounds for implementation.
We contend that stem cell travel facilitators fall within blindspots of regulation, ethical responsibility, and public understanding, and often practice outside customary professional boundaries. In conclusion, we identify a set of core ethical responsibilities of facilitators, focused on their self-identified primary function as supporting informed decision-making by patients, and outline recommendations for their fulfillment.
Methods: We reviewed 112 RDPO websites, conducted an online survey completed by 61 organisational leaders, and interviewed ten leaders and two key informants. Quantitative and qualitative data were analysed using basic descriptive statistics and content analysis, respectively.
Results: Although most are small volunteer-based groups, more than 90 % of the surveyed RDPOs had a goal to promote or support research on the diseases affecting their members. Nearly all (95 %) had undertaken at least one research-related activity – such as providing funding or other support to researchers – in the previous five years. However, RDPO leaders reported considerable challenges in meeting their research goals. Difficulties most frequently identified were insufficient RDPO resources, and a perceived lack of researchers interested in studying their diseases. Other concerns included inadequate RDPO expertise in governing research “investments”, and difficulty engaging researchers in the organisation’s knowledge and ideas. We discuss these perceived challenges in the light of two systemic issues: the proliferation of and lack of collaboration between RDPOs, and the lack of specific governmental policies and resources supporting rare disease research and patient advocacy in Australia.
Conclusion: This study provides unique information about the experiences of RDPOs generally, rather than experiences retrospectively reported by RDPOs associated with successful research. We describe RDPOs’ valuable contributions to research, while also providing insights into the difficulties for small organisations trying to promote research. The study is relevant internationally because of what it tells us about RDPOs; however, we draw attention to specific opportunities in Australia to support RDPOs’ involvement in research, for the benefit of current and future generations affected by rare diseases.
Methods: The Declaration of Istanbul Custodian Group convened an international working group to evaluate the possible role of extraterritorial jurisdiction in strengthening the enforcement of existing laws governing transplant-related crimes across national boundaries. Potential practical and ethical concerns about the use of extraterritorial jurisdiction were examined, and possible responses were explored.
Results: Extraterritorial jurisdiction is a legitimate tool to combat transplant-related crimes. Further, development of a global registry of transnational transplant activities in conjunction with a standardized international referral system for legitimate travel for transplantation is proposed as a mechanism to support enforcement of national and international legal tools.
Conclusions: States are encouraged to include provisions on extraterritorial jurisdiction in their laws on transplant-related crimes and to collaborate with professionals and international authorities in the development of a global registry of transnational transplant activities. These actions would assist in the identification and evaluation of illicit activities and provide information that would help in developing strategies to deter and prevent them
In Rainhorn JD and El Boudamoussi S (Ed.s). New Cannibal Markets: Globalisation and Commodification of the Human Body. pp383-396. Editions Fondations Maison des Sciences de l'Homme, Paris.
Here, we argue that an innovative approach to domestic policy making using the framework of the National Self-Sufficiency paradigm represents the best solution to domestic challenges and the ethical hazards of the global marketplace in reproductive resources.
Le Declaration of Istanbul Custodian Group (DICG) a été formé en 2010 pour promouvoir les principes de la Declaration of Istanbul on Organ Trafficking and Transplant Tourism, et favoriser le transfert de ses préconisations dans les lois et les habitudes professionnelles dans le monde entier. Cette mise au point résume les principes de la Déclaration, et les multiples rôles que doivent jouer les professionnels de santé dans la lutte contre le trafic d’organes et le “tourisme de transplantation”. La mondialisation du commerce et des échanges rend de plus en plus complexe cette lutte. Les professionnels de santé sont en première ligne et ont la responsabilité d’identifier et développer de nouvelles solutions dans cette lutte sans cesse renouvelée.