Two problems about moral responsibility in the context of addiction

Can addiction be credibly invoked as an excuse for moral harms
secondary to particular decisions to use drugs? This question raises
two distinct sets of issues. First, there is the question of whether
addiction is the sort of consideration that could, given suitable
assumptions about the details of the case, excuse or mitigate moral
blameworthiness. Most discussions of addiction and moral
responsibility have focused on this question, and many have argued
that addiction excuses. Here I articulate what I take to be the best
argument for this view, based on the substantial difficulty that
people with severe addiction experience in controlling drug-related
behavior. This, I argue, may in some cases be sufficient to ground a
mitigating excuse, given the way in which addiction undermines
agents’ responsiveness to relevant moral reasons to do otherwise.
Much less attention has been devoted to a second set of issues that
critically affect the possibility of applying this mitigating excuse in
particular cases, derived from the ambivalent nature of agential
control in addiction. In order to find a fitting response to moral harm,
the person with the right standing to blame must make a judgment
about the extent to which the agent possessed certain morally
relevant capacities at the time of the act. In practice, this will often
prove tremendously difficult to assess. The ethical challenge for the
person with the right standing to blame is fundamentally one of
making a judgment about matters that seem underdetermined by the
available evidence.

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Histories of care: gender, experience and humanitarian knowledge(s)

By repositioning Renée-Marguerite Frick-Cramer’s and Marguerite van Berchem’s work in the tracing agencies of the International Committee of the Red Cross, this article seeks to contribute to the development of a history of care involving the production of a form of knowledge aimed at caring, at distance, for people who had been separated due to warfare. This perspective, which  looks  at  examining  the  interactions  between  gender,  class  privilege  and race, allows us to rectify the masculinist vision which has dominated this Geneva-based international agency, as well as to comprehend Frick-Cramer’s and van Berchem’s service activities as having evolved from inconspicuous expertise to invaluable work. A close analysis of the rare institutional records which have been preserved about the missions led by these two female representatives enables us to conclude that their moral concern, which led them to aid both military and civilian populations during warfare, was rooted in emotions such as indignation and resentment.

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May We Make the World?

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Sex and the Planet What Opt-In Reproduction Could Do for the Globe

What if human reproduction was always elective? A prominent bioethicist speculates about the possibilities—and the likely consequences.

What would the world be like if all pregnancy was intended, not unintended as it is nearly half the time now? Considerably better, Margaret Pabst Battin suggests in Sex and the Planet, a provocative thought experiment with far-reaching real-world implications. Many of the world's most vexing and seemingly intractable issues begin with sex—when sperm meets egg, as Battin puts it—abortion, adolescent pregnancy, high-risk pregnancy, sexual violence, population growth and decline. Rethinking reproductive rights and exposing our many mistaken assumptions about sex, Sex and the Planet offers an optimistic picture of how we might solve these problems—by drastically curtailing unintended pregnancies using currently available methods.

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L'Ebola, les bombes et les migrants

L'Ebola, les bombes et les migrants

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In Defense of Normothermic Regional Perfusion

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Deconstructing self-fulfilling outcome measures in infertility treatment

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Quality of Life in People with HIV at the End of Life: Preliminary Results from the Last Gift Observational Cohort Study.

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“The Irish giant” and the questions haunting medical museums

The reopening of the Hunterian Museum has resurfaced questions and concerns about the use of human remains as museum specimens and decolonising museum collections, writes Órla O’Donovan.

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The deadly legacy of a stem cell charlatan

Paolo Macchiarini misled the world over his breakthroughs in regenerative medicine, but why did most of the institutions that supported him bear no responsibility for hosting a rogue stem cell surgeon? It’s time for them to launch full and independent investigations, argue John Rasko and Carl Power

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What Watson and Crick really took from Franklin

Rosalind Franklin was no victim in the discovery of DNA’s structure. An overlooked letter and an unpublished news article, both from 1953, show that she was an equal contributor.

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Reproduction Reconceived Family Making and the Limits of Choice after Roe v. Wade

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How pandemic publishing struck a blow to the visibility of women’s expertise

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A Community-Driven Framework to Prioritize the Use of Donated Human Biological Materials in the Context of HIV Cure-Related Research at the End of Life

Initiated in 2017 after extensive community engagement, the Last Gift program enrolls altruistic volunteers willing to donate their cells and tissues at the end of life to allow studies on HIV reservoir dynamics across anatomical sites. As the Last Gift team received tissue requests outside the scope of HIV cure research, we noticed the absence of guiding frameworks to help prioritize the use of altruistically donated human biological materials. In this commentary, we present a proposed framework for prioritizing the use of donated human biological materials within and outside the end-of-life (EOL) HIV cure research context, using the Last Gift study as an example. First, we discuss regulatory and policy considerations, and highlight key ethical values to guide prioritization decisions. Second, we present our prioritization framework and share some of our experiences prioritizing requests for donated human biological materials within and outside EOL HIV cure research.

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Reflections on Brocher: Philanthropy, fog and restoration

The Brocher Foundation is beautifully positioned on the edge of Lake Geneva, nestling between the Jura mountains in front and the Alps behind. This special space, graced by breath-taking sunrises and sunsets, enables enriching interdisciplinary, international and intergenerational reflection.1 Reflection on some of the most important and challenging issues of our time. Reflection on matters that impact individual scholars in local and global communities. Reflection that enables restoration, instils hope and facilitates moral progress ‘beyond the fog of daily worries’.

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A partner protection package for HIV cure-related trials involving analytical treatment interruptions

Analytical treatment interruptions (ATIs) have become a key methodological approach to evaluate the effects of
experimental HIV cure-related research interventions. During ATIs, sex partners of trial participants might be at risk
of acquiring HIV. This risk raises both ethical and feasibility concerns about ATI trials. We propose a partner
protection package (P3) approach to address these concerns. A P3 approach would provide guidance to investigators,
sponsors, and those who are designing and implementing context-specific partner protections in HIV cure-related
trials involving ATIs. The approach would also help assure institutional review boards, trial participants, and
communities that ATI trials with a P3 would provide appropriate partner protections. We offer a prototype P3
framework that delineates three basic considerations for protecting participants’ sex partners during ATI trials:
(1) ensuring the scientific and social value of the ATI and the trial, (2) reducing the likelihood of unintended HIV
transmission, and (3) ensuring prompt management of any acquired HIV infection. We outline possible ways of
implementing these basic considerations.

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Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States

In the last four decades, HIV has become a manageable chronic
condition for many people with HIV (PWH).1 Since the late 1990s,
combination antiretroviral treatment (cART) has proven to be lifesaving
and has significantly reduced HIV-related mortality.2 Causes of
HIV-associated morbidity and mortality now resemble those of the
general population and include cancer, cardiovascular disease, and
neurological disorders.3 Once faced with a death sentence in the 1980s,
many PWH now wish to give back to science and contribute to HIV
cure-related research at the end-of-life (EOL).4–7
The Last Gift8 is one such observational EOL HIV cure study that
evaluates HIV reservoirs throughout the entire body.9–11 The Last Gift
was initiated in 2017 at the University of California San Diego (UCSD)
and enrolls PWH who have a terminal illness and a prognosis of 6
months or less as determined by their physician.4 In 2019, the Last Gift
was amended to include PWH with a chronic illness and multiple
co-morbidities associated with a five-year mortality of greater than 50%.
This component of the study is called ‘On Deck’, a name provided by the
UCSD AntiViral Research (AVRC) Community Advisory Board (CAB).12
Last Gift study participants elect to donate their body at the time of
death to contribute to HIV cure research.9–11 Participants provide
informed consent to undergo socio-behavioral interviews, ante-mortem
blood and other biospecimen sampling, and, upon death, to undergo a
rapid research autopsy (within 6 h of death) to preserve viral and tissue
integrity.4 To date, over 30 Last Gift participants have been enrolled

with no expectation of direct clinical benefit.5,12 Similar EOL trans-
lational research models have been employed in cancer research.13,14

Participants are considered partners in research towards an HIV cure,
and the study also recognizes the importance of involving next-of-kin
(NOK)/loved ones.15 NOK/loved ones serve as caregivers and help
honor the last wishes of the participants.16,17 The Last Gift holds a broad
definition of NOK/loved ones, recognizing that the definition of family
may be different for each participant.12 Last Gift participants have the
option to refer a NOK/loved one to also participate in the interview part
of the study, while respecting the participants’ unique situations and
wishes for confidentiality.12 To date, most Last Gift participants have
referred a NOK/loved one, although a minority of participants have
elected not to.

The last few years have witnessed an expansion of the ethics litera-
ture on EOL HIV cure research.12,15 Our team has involved community

members to establish basic ethical criteria for EOL HIV cure research.
These include: 1) protection of autonomy through robust informed

consent, 2) avoidance of exploitation and fostering altruism, 3) main-
tenance of acceptable benefits/risks, 4) reducing vulnerability and

ensuring participant-centered focus18 and 5) preserving acceptance of
NOK/loved ones and the community.15 Our team also prospectively
documents ethical lessons learned.12 The socio-behavioral research
component of the Last Gift helps ensure EOL HIV cure research remains
acceptable to Last Gift participants,5 NOK/loved ones,16,17 research
staff,19 and the community.
Our interdisciplinary team was interested to determine if Last Gift
participants and their NOK/loved ones had a clear understanding of
possible risks and benefits associated with being in the Last Gift. Here,
we report results from the closed-ended interview questions related to
the perceived risks and benefits from their perspectives. This data can
inform how we design, conduct, and communicate about EOL HIV cure
research.

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Communicating genetic risk in the family, Ethical challenges and policy approaches

Identification of a genetic condition in a patient can have implications for other family members who
may be at risk of developing the condition, or at risk of passing the condition on to their offspring.
Informing relatives of these risks means they have the option to undergo early screening, prevention,
treatment, or utilize reproductive technologies and thus can have significantly improved health
outcomes for themselves and their future children. When a patient does not inform their relatives of
the genetic risk in the family, the patient's right to autonomy and confidentiality can come into conflict
with the interests of their at-risk relatives, creating an ethical challenge for all stakeholders. The overall
aim of this project is to better understand the complex ethical challenges that arise when
communicating genetic risk in the family, and to explore the impact of both guidelines and policies on
clinical practice and clinician perspectives. The specific objectives of the project are (1) providing an
overview of the ethical landscape with regards to the communication of genetic information and the
duties of health care professionals in this context; (2) understanding the legal duties of patients and
clinicians towards at-risk relatives; (3) analyzing how clinical genomic sequencing consent forms
address communicating genetic risk information to family members; (4) assessing attitudes of the
general population towards family communication practices and policies; (5) assessing attitudes of
clinicians towards policy approches to cases of nondisclosure; (6) developing points to consider for
clinicians and policymakers regarding results with familial consequences and cases of nondisclosure.
To meet these objectives, we utilized a variety of methods to provide an in depth and nuanced analysis
of the ethics of communicating genetic risk in families, namely: a systematic review of normative
documents, an analysis of Belgian and international legislation, an analysis of clinical consent forms for
genomic sequencing, a survey of the general public, and interviews with clinicians. Based on our
research, we developed points to consider for policymakers and clinicians to reduce cases of
nondisclosure. We make recommendations regarding the development of policy approches to
nondisclosure that balance the interests of patients, at-risk relatives, and clinicians, while also
accounting for limitations caused by resources and organization the broader health care context.

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Enhancing social value considerations in prioritising publicly funded biomedical research: the vital role of peer review

The main goal of publicly funded biomedical research is to generate social value through the creation and application of knowledge that can improve the well-being of current and future people. Prioritising research with the greatest potential social value is crucial for good stewardship of limited public resources and ensuring ethical involvement of research participants. At the National Institutes of Health (NIH), peer reviewers hold the expertise and responsibility for social value assessment and resulting prioritisation at the project level. However, previous research has shown that peer reviewers place more emphasis on a study’s methods (‘Approach’) than on its potential social value (best approximated by the criterion of ‘Significance’). Lower weighting of Significance may be due to reviewers’ views on the relative importance of social value, their belief that social value is evaluated at other stages of the research priority-setting process or the lack of guidance on how to approach the challenging task of assessing expected social value. The NIH is currently revising its review criteria and how these criteria contribute to overall scores. To elevate the role of social value in priority setting, the agency should support empirical research on how peer reviewers approach the assessment of social value, provide more specific guidance for reviewing social value and experiment with alternative reviewer assignment strategies. These recommendations would help ensure that funding priorities align with the NIH’s mission and the obligation of taxpayer-funded research to contribute to the public good.

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“Relational Approaches in Bioethics: a Guide to their Differences,”

Contemporary critical approaches to bioethics increasingly present themselves as “relational,” though the meaning of relationality and its implications for bioethics seem to be many and varying. I argue that this confusion is due to a multiplicity of relational approaches originating from distinct theoretical lineages. In this article, I identify four key differences among commonly referenced relational approaches: the scope and nature of relationships considered, the extent of the determining influence on individual selfhood, and the integrity of individual selfhood. Importantly, these four differences carry consequences for the usage of relational approaches within academic and clinical bioethics. I show that these differences attach to multiple objects of critique within mainstream bioethics and imply distinct metaethical commitments. Although I issue a cautionary note about combining relational approaches from distinct lineages, I close by suggesting that many such approaches may have their use, drawing on Susan Sherwin's sense of bioethical theories as lenses.

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