Molecular life extension

By Cynthia Forlini and Ainsley Newson

This article was originally published in Australasian Science and is reproduced with permission. It can be cited as Forlini, C and Newson, A (2018) Molecular life extension. Australasian Science; Vol. 39, Iss. 6, (Nov/Dec 2018): 49. Retrieved from: https://www.australasianscience.com.au/article/issue-novdec-2018/molecular-life-extension.html

Older person shaking a sinlge pill out of an open medicine bottleIt is a universal certainty that we will all die one day. And we have a near universal goal for our deaths to come painlessly, after a long and full life.

Of course illness, disease and accident can cut life short. For many of us, however, our deaths will come as a result of growing old and our bodies gradually failing us.

But should we accept this biological status quo as the basis of our lives? Or is ageing something to rail against and try to defeat?

We already engage in plenty of strategies that claim to slow the outward signs of ageing of our bodies. We also eat well and exercise to protect our hearts and our bones. We continue to read and think to protect our minds. But now, a growing number of geneticists and molecular biologists are seeking a cure for the ageing process itself.

Researchers in Australia and internationally are investigating a number of compounds that might extend life by intervening in key genetic and metabolic pathways. The goal is to live a longer life free of the decline we typically associate with ageing – lower energy, susceptibility to illness, frailty.

While this is no doubt cutting edge science, it raises some big questions that haven’t yet been debated in much depth. Alongside the question of whether we can treat ageing (as we do for many individual diseases), is the question of whether we should.

Promising results from studies using anti-ageing compounds in animal models are appearing in high-ranking journals. Some scientists are even taking these compounds themselves, or giving them to their family members and pets. Products from commercial offshoots of this research are already being marketed, often as health supplements (as these tend to be regulated like food products), but they have yet to go through rigorous independent trials.

Could this research be proceeding too fast? Research translation can be slow and expensive, but it generates the evidence that regulators need to decide whether something should be made accessible to populations. In an era of heightened commercialisation, laissez faire regulatory regimes and ‘need it yesterday’ consumerism, we risk not stopping to look at what the end points might be; and how we feel about them.

The scientists doing this research draw careful lines around being mortal and being immortal; between being human and transcending humanity.

But maintaining these bright lines in research and beyond needs an important conversation about responsibility for the oversight and outcomes of research. Whether this research should be taking place and under which limitations, if any, are critical questions.

There are broader questions about molecular life extension, too. Some have to do with collective responsibilities to share limited global resources. For example, the impact of an ever-increasing population on the environment and food supply would be massive. It would also redefine our common understanding of health, illness and the goals of medicine. In this light, would it be fair to prioritise anti-ageing interventions when many don’t have access to basic healthcare requirements? These are all issues that require a wider community conversation.

From a community perspective, the idea of living and ageing well remains a matter of debate. Some initial research with members of the public suggests that people are not uniformly in favour of life extension, as might be expected. At the very least, quality of life is favoured over quantity. Even if quality could be assured, what would constitute an ethical notion of a reasonable length of life?

Other questions have to do with individual responsibilities. Living longer could influence whether, when, and how individuals should choose to reproduce. The potential for pharmaceutical interventions to slow ageing could have an impact on the lifestyle choices that people make to maintain their health. Would it be acceptable if pharmaceuticals could replace the need for eating well and exercising? Are such activities inherent to a notion of a life lived authentically and well?

Such questions are not unique to this research. They are also arising in the context of gene editing, another technology poised to radically change health. But we don’t yet have any clear answers there either.

The role and expectations around ageing in our society are profound. This process shapes our life courses, relationships and expectations. Moving from a position where ageing is inevitable (and, usually, accepted) to it being seen as something to ‘cure’ would cause a drastic shift in the collective and individual responsibilities that our societies are built upon. We are left to consider whether ageing is part of our humility, or less than it?

 

Dr Cynthia Forlini is a Research Fellow in neuroethics at Sydney Health Ethics, University of Sydney. She was awarded an Australia Research Council Discovery Early Career Research Award (2015-17) for her work on cognitive ageing.

Dr Ainsley Newson is Associate Professor of Bioethics and Deputy Director of Sydney Health Ethics at the University of Sydney

Photo by rawpixel on Unsplash

What do intersex people need from doctors?

Magazine name on top of multicoloured tilesThe current issue of O&G Magazine (from RANZCOG) features a series of articles relevant to the care of LGBTI populations. Sydney Health Ethics PhD candidate Morgan Carpenter contributed a powerful piece on deeply troubling and often involuntary medical interventions carried out on babies and children with intersex variations, including sterilization and so called ‘normalizing’ surgery. He ends with a demand for “transparency, accountability and respect” from the medical professions. See an extract from the piece below and please click through to read the full article.

The current social and medical environment presents a challenging contradiction. That is, medicine constructs intersex bodies as either female or male (and “disordered”), while law and society construct intersex identities as neither female nor male. Medicalisation is posed as a solution to discrimination and othering, while legal and social othering of intersex people as a third sex is posed as a solution to medicalisation.(2,3) This conflict arises from fundamentally different ideas – not about the nature of intersex variations, but rather about their meaning and how to name and treat them. Neither medical nor socio-legal models allow for individual self-determination. Neither is based on strong evidence. Both cause harm.

Carpenter, M (2018) What do intersex people need from doctors? O&G Magazine, 20(4) something? Retrieved from https://www.ogmagazine.org.au/20/4-20/what-do-intersex-people-need-from-doctors/

Considering the impact of communities on research practice – the case of HIV

To mark World AIDS Day on 1 December we are releasing Dr Bridget Haire’s recent Miles Little Lecture: Considering the impact of communities on research practice – the case of HIV.

Across the globe, activism by communities affected by HIV has shaped research, policy and treatment. From ACT-UP die-ins in the 80s, through to the treatment access actions in the 90s and major sex worker led protests in the 2000s, HIV activism has presented an informed and often photogenic face to global media. In Australia and elsewhere, behind the attention-grabbing activist antics sat great networks of community-based collectives that gradually morphed into sober and respectable NGOs that provided care for the sick, health promotion to the potentially at risk and advice to government.

In this presentation I will consider some of the key lessons that AIDS has taught us about the role of communities in emergent infectious disease epidemics, drawing on my experiences as an HIV community sector worker turned bioethics researcher. I will argue that HIV has demonstrated how the involvement of affected communities is critical to ethical responses to infectious disease threats and provide examples from my colleagues in Nigeria about how this has been leveraged in the response to Ebola. I’ll finish with some reflections on funding community collaboration in research and health programming.

Dr Bridget Haire is a senior research fellow at the Kirby Institute, University of NSW, where she conducts research in the areas of research ethics, public health and human rights, particularly with regard to HIV and other blood-borne infections and sexual health. At the time of the lecture Bridget was the President of the Australian Federation of AIDS Organisations (AFAO), the federation for the community-based response to HIV in Australia. Bridget has a strong commitment to community-based health responses and prior to academia was involved with HIV and sexual and reproductive rights for more than 20 years as an advocate, editor, journalist and policy analyst. She completed her masters and PhD at Sydney Health Ethics.

The Miles Little Annual Lecture is hosted by Sydney Health Ethics, University of Sydney. It honours our inaugural Director, Professor Miles Little, who founded the Centre for Values, Ethics and the Law in Medicine (VELiM) in 1996. The centre was renamed Sydney Health Ethics in 2017. The annual lecture celebrates Professor Little’s significant and continuing contribution to scholarship in this area.

Is Cognitive Enhancement a Problem in Australia?

By Cynthia Forlini

This article was originally published in Australasian Science and is reproduced with permission. It can be cited as Forlini, C (2018) Is Cognitive Enhancement a Problem in Australia? Australasian Science; Vol. 39, Iss. 5, (Sep/Oct 2018): 49. Retrieved from: https://www.australasianscience.com.au/article/issue-sepoct-2018/cognitive-enhancement-problem-australia.html [paywalled]

Graphical representation of a head containing cogs alongside a broken capsule releasing more cogsJust because the non-medical use of cognitive stimulants isn’t common, it doesn’t mean it isn’t a problem.

“Cognitive enhancement” is a catch-all term for the improvement of cognitive function: attention, alertness and memory. It has caught our attention because it is thought to be the main motive for the non-medical use of prescription stimulants like methylphenidate (Ritalin) and modafinil by university students.

People who take these stimulants believe they help gain an edge in competitive environments despite weak scientific evidence to support their so-called enhancement effects in healthy individuals. Over the past decade, international studies have contributed to our understanding about who takes stimulants, when and why. One question lingers: is it a problem?

These stimulants are scheduled as “drugs of addiction” that are illegal to possess without a prescription. A doctor would not prescribe their use to otherwise healthy individuals. Peers, colleagues and family members with prescriptions for stimulants are the major sources of tablets diverted for non-medical use. Others buy them online.

Exact global figures for the prevalence of the non-medical use of prescription cognitive stimulants remain elusive. Studies vary in the measures and methods they report, which makes them hard to compare. In students, results from the USA suggest usage rates ranging from 5% to 35%. In Australia, studies have reported a narrower range: between 6.3% and 10.9% of students used a stimulant for enhancement in their lifetime (6.6% in New Zealand).

In the general population, data from 2012 suggest that around 2.4% of Australians have used a stimulant non-medically. These rates are generally considered low, especially compared with the use of more readily available substances such as high energy drinks, caffeine and alcohol. Just because the non-medical use of stimulants isn’t common, it doesn’t mean it isn’t a problem.

Looking for evidence of harm or adverse effects in those taking stimulants non-medically might provide a better answer. Using prescription stimulants is generally associated with disturbances in sleep, appetite, cardiac rhythm and mental health, but few of these effects have been officially reported as a result of non-medical use.

Little evidence of the harm students may be experiencing doesn’t mean there is none. The problematic aspects of the practice could be elsewhere, or people may not be reporting side-effects because they fear legal consequences.

Investigating the motives behind non-medical stimulant use for cognitive enhancement is also stirring up concerns for the overall health of students. Common motives for use include improving concentration, focus, wakefulness, better marks and some recreational uses.

Some researchers are suggesting that students use stimulants to compensate for sleep deprivation or cope with stress associated with a variety of competing demands (e.g. studies, sports, paid work and social activities). Others have proposed that the non-medical use of stimulants is a mode of self-medication for symptoms of depression caused by disinterest and lack of motivation. We don’t yet know why students turn to stimulants to manage these issues instead of seeking medical attention or using non-pharmacological approaches such as sleep, diet and exercise.

The ethical issues in the non-medical use of stimulants for enhancement are complex. Acceptability of their use among students is generally quite low. Part of the reason might be due to the parallels with doping in sports (e.g. inappropriate possession of a substance and gaining an unfair advantage over peers). However, cognitive enhancement appears to be socially embedded, suggesting that other factors might be trumping individual morals. Many of the risk factors for use have socio-economic underpinnings, such as university location, gender, low or average academic performance, fraternity membership and a history of drug use.

Peer groups are potentially coercive environments. On the one hand, an individual who will not take a stimulant might feel disadvantaged in a group where it is common. On the other hand, the perception that stimulant use is common among one’s friends might make it seem more acceptable.

Whether and on what basis we deem the non-medical use of stimulants a problem in Australia, or not, remains an open question. There is plenty of evidence available to inform this decision, but a conclusion will automatically raise another question: who will be responsible for addressing risk factors or governing the non-medical use of stimulants in competitive environments?

 

Dr Cynthia Forlini is a Research Fellow in neuroethics at Sydney Health Ethics, University of Sydney. She was awarded an Australia Research Council Discovery Early Career Research Award (2015-17) for her work on cognitive ageing.

Image Credit: Sangoiri/Adobe

Intersex human rights: clinical self-regulation has failed

By Morgan Carpenter

intersexawarenessday-640x640

“The New York Times recently disclosed that the Trump administration may seek to redefine gender to refer to two unchangeable biologically-determined sex categories. As can be seen in many of the responses to this proposal, not everyone has innate biological sex characteristics that neatly line up with XX or XY sex chromosomes. What might be less well understood is that, for much of the last century, medicine has attempted to modify the bodies of people with non-conforming sex characteristics to make sure that they match up, as closely as possible, to medical and social norms for female or male categories. For more than 25 years, intersex people have been calling for an end to these often forced and coercive medical interventions.” Read the rest of the article here http://www.rhmatters.org/news/intersex-human-rights-clinical-self-regulation-has-failed/

 

Morgan Carpenter is a co-executive director of Intersex Human Rights Australia and a graduate and PhD candidate at Sydney Health Ethics, University of Sydney. He is a member of a current Australian Human Rights Commission expert reference group on protecting the rights of people born with variations of sex characteristics in the context of medical interventions. Find out more at morgancarpenter.com.

Image from Intersexday.org

Journal of Bioethical Inquiry, 15(3)

Journal cover, purple background with transparent biological material and the journal titleThe Journal of Bioethical Inquiry is a forum for discussing and debating ethical, cultural and social issues arising in medicine, the health sciences and health care in general. Coverage includes core areas of conventional bioethics, such as research, clinical practice and medical technology. The journal also addresses questions of pressing contemporary relevance, such as the implications of current world events for the health of populations, and critical analyses of specific social policies around the world and their likely impact on health and welfare and systems of power. Volume 15 Number 3 is now available online.

Editorial
Embedded Journalists or Empirical Critics? The Nature of The “Gaze” in Bioethics.
Michael A. Ashby & Bronwen Morrell

Recent Developments
Social Media: The Unnamed Plaintiff
Bernadette J. Richards

Critical Response
Forget Evil: Autonomy, the Physician–Patient Relationship, and the Duty to Refer
Jake Greenblum & T. J. Kasperbauer

Critical Perspectives
Parental Moral Distress and Moral Schism in the Neonatal ICU
Gabriella Foe, Jonathan Hellmann & Rebecca A. Greenberg

Critical Perspectives
Ethical Issues of Using CRISPR Technologies for Research on Military Enhancement
Marsha Greene & Zubin Master

Symposium: Collective Representation in Healthcare Policyy
One For All, All For One? Collective Representation in Healthcare Policy
Karin Jongsma, Nitzan Rimon-Zarfaty, Aviad Raz & Silke Schicktanz

Symposium: Collective Representation in Healthcare Policy
Representing Whom? U.K. Health Consumer and Patients’ Organizations in the Policy Process
Rob Baggott & Kathryn L. Jones

Symposium: Collective Representation in Healthcare Policyy
Legislating Patient Representation: A Comparison Between Austrian and German Regulations on Self-Help Organizations as Patient Representatives
Daniela Rojatz, Julia Fischer & Hester Van de Bovenkamp

Symposium: Collective Representation in Healthcare Policy
Representative Claims in Healthcare: Identifying the Variety in Patient Representation
Hester M. van de Bovenkamp & Hans Vollaard

Symposium: Collective Representation in Healthcare Policy
Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel
Silke Schicktanz, Nitzan Rimon-Zarfaty, Aviad Raz & Karin Jongsma

Symposium: Collective Representation in Healthcare Policy
Mitochondrial Replacement Techniques
Jacquelyne Luce

Symposium: Collective Representation in Healthcare Policy
Are ME/CFS Patient Organizations “Militant”?
Charlotte Blease & Keith J. Geraghty

Original Research
Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective
Lisa Eckstein & Margaret Otlowski

Original Research
Medicolegal Complications of Apnoea Testing for Determination of Brain Death
Ariane Lewis & David Greer

Original Research
Commodification and Human Interests
Julian J. Koplin

Original Research
Attitudes Towards the Donation of Human Embryos for Stem Cell Research Among Chinese IVF Patients and Students
Achim Rosemann & Huiyu Luo

Original Research
Responsibility as an Obstacle to Good Policy: The Case of Lifestyle Related Disease
Neil Levy

Original Research
Why Do Medical Professional Regulators Dismiss Most Complaints From Members of the Public? Regulatory Illiteracy, Epistemic Injustice, and Symbolic Power
Orla O’Donovan & Deirdre Madden

Should there be sub-specialties in bioethics? To split or not to split…

Looking down at shoes and legs from above, left foot is on plain red carpet, right foot is on brightly patterned carpet

Credit: Joshua Coleman

By Cynthia Forlini, Wendy Lipworth, Ainsley Newson (who all contributed equally)

In May 2018, Wendy gave a seminar at our Centre on whether there was more than one way of ‘doing’ bioethics. She talked about the ongoing phenomenon of splitting bioethics scholarship into sub-specialties.

This question arose for her because she had been grappling with how to pull together her many research interests into a coherent narrative, with the goals of developing a productive research program and progressing in her career (e.g. having a story to tell in grant and promotion applications). Specifically, Wendy was wondering whether she can and should construct a new sub-specialty of bioethics in pharmaceutical ethics, given that this theme seemed to connect many of her interests.

This got us all talking, because it turns out that each of us had had a similar experience, at various points in our careers, across three continents. Each of us identifies with mainstream bioethics, but can be said to work in a sub-specialty that addresses a distinct subject matter. Wendy’s work seems to coalesce around issues to do with therapeutics, Cynthia’s expertise lies in neuroethics, and Ainsley has spent a very long time thinking about ethics and genetics.

At the same time, we also realised that despite our different day to day domains of application, many similar concepts underpin our work, which led us to wonder: what’s the point of naming a sub- specialty if we are all working on similar concepts?

So, we came together over a glass of wine to think through the pros and cons of having sub-specialities in bioethics. This is not a new issue, but we thought it was worth re-inventing the re-invented wheel, in the hope of gaining some traction this time.

In her talk, Wendy referred to a 2007 paper by Fritz Allhoff that she found helpful. Allhoff makes a useful distinction between what he called ‘metaphysical splitting’ (which is the claim that these things are somehow new or different) and ‘pragmatic splitting’ (which entailed paying attention to particular things even if they are not really unique). Wendy also drew on some of her earlier work on exceptionalism in evidence-based medicine, biobanking and big data that showed that there are both advantages and disadvantages of viewing emerging phenomena as different from existing ones.

Over the course of our evening, we discussed some of the key claims for and against splitting bioethics (aka creating sub-specialties). These resonated with our collective experience of navigating specific areas of interest within mainstream bioethics.
Arguments for metaphysical splitting basically collapse into arguments that things are new, and therefore warrant special attention. This novelty might stem from:

  • a new practice or scientific technology that needs examination (e.g. gene editing);
  • a new scale or urgency of an existing issue (such as privacy issues associated with “big data” and machine learning);
  • a new moral problem (such as free will in neuroethics) or form of moral argumentation (such as the claim in public health ethics that the hegemonic status of individualism should be challenged); or
  • a new meta-ethics (e.g. in neuroethics where you think about how brains “do ethics”)

The primary claims against (naïve or unjustified) metaphysical splitting are that it:

  • draws false distinctions, and thus sacrifices richness and depth of scholarship;
  • precludes opportunities for cross-fertilisation of ideas;
  • gets confusing, as people use different terms to mean the same thing;
  • can entrench blind spots, because scholars cannot see that they have common concerns;
  • legitimates hype by portraying issues as being new and different; and that it
  • obscures the opportunity to actually identify any real differences.

It could be argued that, even if a phenomenon is not really new or different, there is still benefit in acting as though it is and paying special attention to it (i.e. pragmatic splitting). Pragmatic splitting is supported by claims that it is impossible for us to be across every issue, concept and theory. Focusing on a particular sub-specialty allows us to gain expertise of that speciality and acquire the necessary deep knowledge (including practical or policy knowledge) to do high quality research.

Being a specialist also, for better for worse, allows us to attract funding and be known for a particular domain of work. Further, we all come from ‘somewhere’ and we bring with us our disciplinary footprints.

Claims against pragmatic splitting are that it tends to be driven by money, self-importance or ivory tower interests rather than genuine need. It can treat certain issues exceptionally, such as how genetic information should be managed. This isn’t an argument against splitting so much as a perverse consequence of it. Pragmatic splitting also draws attention to certain things over others; and that attention can be misguided, such as devoting energy to arguing about the right to pay for cosmetic surgery when there are entrenched inequities in access to basic healthcare.

So where does this leave us?

We took away from this discussion that there is no one position here that is clearly superior—at least for the moment. If we do want to try to figure out an answer (and we weren’t quite in agreement about whether an answer is necessary or possible), then we will need to address several fundamental questions: What is bioethics for? What outcomes do we want it to achieve, and how? What kind of a field do we want to work in, and how might specialising help or hinder?

One thing we do agree on is that, if we do keep some ‘walls’ up in bioethics, it is important to take a peek over the top every now and then. If we don’t, we may miss opportunities for rich scholarship, where similar concepts and theories have traction across numerous specialties in bioethics. Each of us also might also be wise to reflect on our academic journeys (no matter how far along the road we are), and to question our intuitions and practices with respect to sub-specialties in bioethics.

Dr Cynthia Forlini is a Research Fellow in neuroethics at Sydney Health Ethics, University of Sydney. She was awarded an Australia Research Council Discovery Early Career Research Award (2015-17) for her work on cognitive ageing.

Associate Professor Wendy Lipworth is a bioethicist and health social scientist at Sydney Health Ethics, University of Sydney.

Ainsley Newson is Associate Professor of Bioethics and Deputy Director of Sydney Health Ethics at the University of Sydney