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.

Samaritans at the gates: sex determination and the ethics of informational gatekeeping

By Anson Fehross

It is common in Australia to provide fetal sex information to prospective parents during routine ultrasounds.[i] Studies across the world similarly indicate a high level of support for this practice by prospective parents.[ii] This practise has enabled new traditions around pregnancy, Square cake with green American football decoration on one half and pink ballet theme on the otherfrom preparing siblings for the arrival of a brother or sister, to the ‘gender reveal party’, in which the results of a sonogram are announced to family and friends bearing gendered gifts.[iii] It is intuitively plausible, furthermore, that the provision of information to patients improves their autonomy. After all, access to information allows individuals to make informed choices about their own lives.[iv]

Tamara Browne has recently provided a compelling case against this appeal to patient autonomy, concluding that medical professionals should withhold sex information because of its propensity to undermine autonomy.[v] Her argument proceeds as follows.

Browne notes first that there is a high likelihood of patients misinterpreting information about fetal sex. Due to widespread belief in gender essentialism, parents routinely mistake information about sex as information about gender. The importance of sex information to parents is symptomatic of this: presumably they are not merely interested in what genitalia or chromosomes the fetus possesses. Rather, they consider sex information to be information about the gender traits of the future child. The problem is that sex is not gender and nor does sex determine gender: gender refers to socially constructed and mediated traits, rather than biological features of the fetus.[vi]  So, if a parent were to take information that their fetus is female as indicating that, say, the child will be more emotional than rational, or interested in dolls rather than cars, they would be erroneously conflating sex with gender and subscribing to gender essentialism.

Browne’s second point is that acting on this misinterpretation is against patients’ interests. The ultimate goal of parents is to have certain kinds of childrearing experiences: fathers expect that sons will share their interest in sport or fishing, women imagine daughters will take to caregiving and shopping.[vii] The parental interest in these activities is, of course, not the problem—the problem is that conflating sex with gender leads parents to act on the erroneous belief that these childrearing experiences are contingent upon having a child of the appropriate gender. This is clearly false, as girls are just as capable as boys at outdoor activities, and boys are equally capable of valuing caregiving and shopping. More worrying still, belief in this kind of gender essentialism is self-fulfilling, as future childrearing experiences are ruled out based on fetal sex. This means, by providing sex information, the medical profession undermines parental autonomy, as parents understand sex information as foreclosing upon on the exact types of ultimate goals the parents had in mind. Browne therefore argues in favour of prohibiting the provision of sex information for any non-medical reason.

Browne’s argument is thus an instance of what I call informational gatekeeping. Informational gatekeeping occurs whenever a medical professional is justified in withholding information from a patient because they will misunderstand the information and, crucially, acting on this misunderstanding is against the patient’s interests.

The problem with Browne’s account is that it relies on parents making a factual error. It is, of course, plausible that many parents are factually mistaken of the research revealing how gender and sex come apart. Gatekeeping in such cases might be justified, then, precisely because encouraging the idea that sex information is important limits the autonomy of these parents by undermining their ultimate goals.

However, this does not seem uniformly the case. A good many individuals are limiting, in effect, themselves because of their values. Let us take the example provided above of a father who wants a boy with whom to play sport. It is true that female children are no less capable of playing sport than any boy, so if the story was left here it would appear as if Browne’s point holds. But what of those parents who claims, in effect, that a girl ought not play sport, rather than cannot? Such a parent could concede that a child’s sex does not limit their capacity to play baseball, while maintaining the normative claim that girls ought to stick to certain kinds of activities—such as caring and domestic duties. The claim, then, would be that certain parents do not want to have a certain kind of child rearing experience with just any child. They take sex information as indicative of their child-rearing futures because they think that children of that sex ought to conform to a traditional gender identity. This is their autonomous ultimate goal, repugnant as it may be.

If I am right, then gatekeeping information from these parents amounts to an unwarranted imposition of values upon them. Gatekeeping would then amount to precisely the kind of paternalism bioethics and medicine have turned their back on long ago. We ought not allow medicine to override the values of patients based on parents acting according to unjustified or, indeed, repugnant values.

So, then, does this mean that medical professionals can only educate parents, simply demonstrating how sex and gender come apart in important ways? If this was all that we could claim, it would mean that things will remain largely as they are, as many (if not most) parents will dismiss such concerns and plough on regardless.

Not so. I suggest that medical professionals should be willing to challenge their patients regarding the value that they place on having gendered childrearing experiences.[viii] I envisage that challenging patient values in this domain would involve three stages.

First, challenge the importance of their values. This would go beyond asking whether the operative values are appropriately weighted against other, contrary, values but also asking whether the values ought to be regarded as important by the patient at all. Practitioners would thus ask questions like ‘Why should this kind of childrearing experience be of greater value to you than others?’ ‘Why is having a child adhere to gender norms so important to you?’ ‘Why aren’t you open to experiencing life with a child of whichever gender?’

Second, practitioners would seek to clarify decisions as being reflections of values. This does not only mean that the practitioner would demonstrate how the decision to seek out sex information amounts, in many cases, to subscribing to gender essentialism. It would also involve the professional demonstrating how the medical response is also a reflection of values. This serves to combat the pervasive assumption that gender norms are reflections of biological reality while also demonstrating that medicine is committed to combating sexism.

Third, and finally, practitioners would root out contradictory values. This would involve challenging the patient to locate the decision she makes within her larger value set in cases where her decision appears to clearly contradict her explicitly held values. So, for example, a patient who is steadfast that she harbours no sexist norms whatsoever would be asked to explain how that squares with the decision to seek out sex information.

The goal of value challenge amounts to an attempt to change minds. If, after appropriate challenge, the patient is undeterred in her desire to receive sex information the medical profession must, unfortunately, comply. This does not mean that value challenge has failed. Challenging the patient communicates that medicine, as a discipline, does not endorse sexist norms nor the values underlying them. This is the best we can do in this situation, but it is still a worthy goal.

 

With thanks to Caitrin Donovan, John Forge and Chris Ryan for their helpful feedback. [edited to add]

Anson Fehross is a PhD student at Sydney Health Ethics, University of Sydney. He joined the centre in 2015, after completing a MSc in the Unit for History and Philosophy of Science. Much of his research focuses on the interface of metaphysics and applied ethics. His thesis sets out a new model for substituted decision making in both general medicine and psychiatry.

[i] E. S. Bauman et al., “What Factors Are Associated with Parental Desire to Find out the Sex of Their Baby?,” Ultrasound Bulletin 11, no. 1 (2008): 19–24.

[ii] Thomas D. Shipp et al., “What Factors Are Associated with Parents’ Desire to Know the Sex of Their Unborn Child?,” Birth (Berkeley, Calif.) 31, no. 4 (December 2004): 272–79, https://doi.org/10.1111/j.0730-7659.2004.00319.x; Chibuike Ogwuegbu Chigbu, Boniface Odugu, and Obioma Okezie, “Implications of Incorrect Determination of Fetal Sex by Ultrasound,” International Journal of Gynecology & Obstetrics 100, no. 3 (November 26, 2007): 287–90,https://doi.org/10.1016/j.ijgo.2007.09.021; Angelique J. A. Kooper et al., “Why Do Parents Prefer to Know the Fetal Sex as Part of Invasive Prenatal Testing?,” ISRN Obstetrics and Gynecology 2012 (2012): 524537, https://doi.org/10.5402/2012/524537.

[iii] Leena Nahata, “The Gender Reveal: Implications of a Cultural Tradition for Pediatric Health,” Pediatrics 140, no. 6 (December 2017).

[iv] K. Grill and S. O. Hansson, “Epistemic Paternalism in Public Health,” Journal of Medical Ethics 31, no. 11 (November 1, 2005): 648–53, https://doi.org/10.1136/jme.2004.010850.

[v] Tamara Kayali Browne, “Why Parents Should Not Be Told the Sex of Their Fetus,” Journal of Medical Ethics 43, no. 1 (January 2017): 5–10, https://doi.org/10.1136/medethics-2015-102989; Tamara Kayali Browne, “How Sex Selection Undermines Reproductive Autonomy,” Journal of Bioethical Inquiry 14, no. 2 (June 1, 2017): 195–204, https://doi.org/10.1007/s11673-017-9783-z.

[vi] It is worth noting there are good reasons to be suspicious of the claim that ‘sex’ is a biological, natural, kind whereas gender is uniquely a social kind. For more see: John Dupré, “Sex, Gender, and Essence,” Midwest Studies In Philosophy 11, no. 1 (1986): 441–57, https://doi.org/10.1111/j.1475-4975.1986.tb00508.x; Judith Lorber, “Believing Is Seeing: Biology as Ideology,” Gender & Society 7, no. 4 (December 1, 1993): 568–81, https://doi.org/10.1177/089124393007004006.

[vii] Browne, “How Sex Selection Undermines Reproductive Autonomy,” 196.

[viii] C.f. Julian Savulescu, “Rational Non-Interventional Paternalism: Why Doctors Ought to Make Judgments of What Is Best for Their Patients.,” Journal of Medical Ethics 21, no. 6 (December 1995): 327–31.

Image from Karen’s Cake Shoppe, used with permission.

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

Harris Student Fellowship Showcase

Small wooden artists' mannequin lyning prone on large grey pebbles with quartz linesPlease join us for this year’s Harris Fellowship Showcase. Hear the results of students who have made art about grief, created a web advocacy tool for chronic pain, constructed a podcast series in the medical humanities and explored nurses in remote Indigenous communities. Their work is creative, inspiring, hopeful and exploratory.

Staff and students from all faculties will find these projects fascinating.

Students interested in applying for a Harris Fellowship 2019/20 are highly encouraged to attend. For more information on this Fellowship contact Dr Claire Hooker.

Date: Thursday, 29th of November 2018

Time: 10.00-11:30am (followed by light lunch)

Venue: Burkitt Ford Lounge, Edward Ford Building, Fisher Road, The University of Sydney NSW 2006 (Camperdown Campus)

This is a FREE event however registration is essential via Eventbrite.

This project received funding from the Harold and Gwenneth Harris Endowment for Medical Humanities.

The Harold and Gwenneth Harris Endowment for Medical Humanities aims to develop capacity in the Health Humanities; to encourage cross-disciplinary learning and interaction between health, medicine, the arts and humanities; to enable students and clinicians to access experiential learning in the Health Humanities that fall outside standard University activities or funding parameters; and to enrich student learning and development to make medicine and health care more humanistic and patient-centered, and encourage self-care.

 

Image from Pixabay, used under CC0.