Elle Loughran Student, Trinity College Dublin Elle Loughran is a Laidlaw scholar studying genetics at Trinity College Dublin in Ireland
This post first appeared in Spectrum, the leading site for autism research news.
I am a student and researcher studying evolutionary genetics, and I am autistic. I often come across papers on autism research, but unfortunately, reading them is rarely a positive experience.
Too much autism research fails to acknowledge autistics as people who can read and make valuable contributions to the field. Instead, it casts them as little more than passive study participants or recipients of treatment. This shortsightedness damages research and scientists’ ability to help autistic people.
Reading autism research as an autistic person can feel like being treated as an alien. For example, consider a 2019 paper that stated: “This finding reinforces other work which shows that autistic people can have, maintain, and value close romantic relationships and friendships.” Imagine how bizarre it would be to read that about yourself.
I do not mean to pick on that paper in particular, but on a research culture in which anyone would think that sort of statement needs to be made.
This sort of culture results in seeing top researchers throw around blatantly wrong and offensive ideas about my community. For an old but powerful example, British researcher Simon Baron-Cohen endorsed a quote that suggested autistic individuals experience people at dinner parties as “noisy skin bags” that are “draped over chairs.” In my view, the appropriate response to that is, “No, that is absolutely not how we experience anything. What the hell?” Of course, that would not be an appropriate academic reply.
I understand that even seemingly obvious things need to be examined and tested in science, but if someone were to suggest that the moon is made of cheese, I doubt researchers would insist on disproving it with a study. Yet somehow autistic people must be so strange and unknowable to researchers that they cannot dismiss equally implausible characterizations of us.
In fact, many autistic people are available to answer questions about how we see things. Many of us speak up and share our stories proactively. It can seem to us as if scientists are not listening.
Then there are papers that suggest society would rather fewer people like me existed — and not because they care about my suffering. Or those that survey the prospects of preventing autism, pointing out that these are “high priorities for researchers, parents, advocates, clinicians, and educators.” Why is there is no mention of autistic people on that list?
Integration barriers:
The opportunities for someone like me to correct the culture in autism research are limited.
Often when I see these things in the course of my work, I just sigh and ignore them. If I’m discussing a paper with my scientific peers, I do not want to bring up issues with the paper’s treatment of autism and be seen as an ideologue, research subject or object of pity rather than as a respected colleague.
Other people’s responses can also thwart meaningful exchange. Last summer, I ‘came out’ as autistic while in conversation with an autism researcher and several of her colleagues. The people in the group responded with something along the lines of, “Oh, well, you’re not like other autistic people, so those points do not apply to them.”
If a person’s ability to converse with you makes you assume she is not like ‘real autistics,’ then your idea of autism is automatically going to be ‘people who can’t talk to me.’ You will have a flawed understanding of autism and may not be able to see autistic people as potential colleagues. This risks researchers perceiving autistic people purely as research subjects who do not talk back, have opinions or contribute to the process.
Autistic people are treasure troves of information on their own lives. By including more autistic voices in research, we as scientists could improve our ability to gather knowledge about the condition.
Given the flaws in prevailing theories of autistic psychology, I believe we should encourage more qualitative, open-ended research that seeks input from autistic people and establishes a firmer basis for future studies. We could also seek their help in prioritizing treatment targets. Likewise, if biomedical researchers are going to get funding for studying autism, they must make more of an effort to engage with the autistic community and their wishes.
Things are getting better, and many researchers are doing good work. But listening to autistic people could help them make faster progress. Autistic people are not aliens with whom scientists cannot communicate. We are right here. We are reading what you have to say, and that communication can go both ways.
Clinical trials have enormous value to society as they provide the most robust means of working out whether or not particular treatments used to improve the health of our population work or not. Governments have a stated objective to increase participation in clinical trials based upon a series of assumptions that extend beyond their utility as a means to derive the highest level of reliable evidence about the efficacy and safety of interventions. One of these is that those people who are included derive a tangible benefit from doing so. Whilst this may not be true in all cases, after all up to 50% of people may receive an inferior treatment by definition, there is the potential for people to derive individual benefit, and it is often stated that those involved in a trial receive a higher standard of care than those not included. Certainly, the additional testing and closer scrutiny of people on a trial may equate in some instances to better care, but this should not be seen as a major driver as it could be argued that equitable care should be available as a universal right. A less discussed benefit is the connectedness and satisfaction that people may derive from making a tangible contribution to society through participation in clinical research. Furthermore, there may be indeterminate peer group benefits even if an individual does not benefit.
In an Australian study Smith et al (1) found that CALD people whose preferred language was not-English (PLNE) had the lowest participation rates in clinical trials. Whilst CALD people whose preferred language was English (PLE) had greater levels of enrollment than the PLNE group, they were still underrepresented by population. This has been described across the world and is identified as a pressing concern (2). Understanding why this is the case is important for a number of reasons. In multiculturally diverse countries like Australia, testing interventions where a significant proportion of the population are not included could result in evidence that is not applicable to those people. This spans across biological differences which may be relevant to drug efficacy or toxicity through to interventions such as screening that may fail to be useful in those populations. Where there is evidence that participation in a clinical trial may present specific advantages there is also the issue of injustice through exclusion of a particular group or groups of persons. Certainly, from an implementation perspective, not including a diverse group of participants and analyzing for cultural and behavioral acceptability may mean that even if an intervention has merit it fails to be taken up.
The reasons for non-inclusion are likely more complex than those of language barriers, although having protocols for clinical trials that specifically exclude people who don’t have higher levels of proficiency in English do not help. It would seem that the language barrier could be soluble through providing greater resources to enable translation services, particular in areas with a clear need for this. Certainly, multi-national trials already have PICFs in multiple languages and these could be readily deployed through use of innovative technologies including eConsent processes.[1] Funders of clinical trials could make it a requirement for such inclusivity and back it up through provision of specific funding for this in any grants they award. Legal means to enforce this, whilst possible, are unlikely to drive systemic change and could have the unintended consequence of making it harder to do any trials at all in an environment already subject to extreme financial pressures.
However, a major reason for low levels of participation in clinical trials may be attributed to equity of access to clinical services in the first place. It is hard to recruit people from the general population into clinical trials, but even harder if specific members of the population don’t come to the health service in the first place. There is relatively little research on this topic and it would seem logical to do this as a priority in parallel with examining why people fail to participate in clinical trials due to language barriers. Perhaps clinical trials are simply the canary alerting us to broader inequities that need greater research and investment. Research into solutions to these inequities is accordingly a priority and may solve clinical trial participation rates as a consequence.
References
Smith A, Agar M, Delaney G, Descallar J, Dobell-Brown K, Grand M, et al. Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers. Asia Pac J Clin Oncol. 2018;14(1):52-60.
Clark LT, Watkins L, Pina IL, Elmer M, Akinboboye O, Gorham M, et al. Increasing Diversity in Clinical Trials: Overcoming Critical Barriers. Curr Probl Cardiol. 2019;44(5):148-72.
Nik Zeps participated in the CCV forum at the COSA ASM. A full report of the workshop and research by the CCV and MCCabe centre is forthcoming.
Aviva Kipen, Union for Progressive Judaism and Progressive Judaism Victoria.
In 2015, I earned a Doctor of Ministry Studies degree from the University of Divinity in Melbourne. The thesis, investigating how 13 Christian and Jewish clergy experienced HREC service in their pastoral care roles, arose from my own human research ethics committee and Victorian Biotechnologies Ethics Advisory Committee service and extensive interfaith work. I had been mentored into my service to the Monash University HREC by the Rev’d Dr Judy Redman, the then Victorian Uniting Church Outreach Ministries Coordinator. I found myself in the company of Anglican clergy and had succeeded Catholics – nuns and priests – Buddhist monks and also male rabbis who had served before me. Joining Judy, the serving female minister, made the gender issue less remarkable than it might otherwise have been, even in the late 1990s. The faith interchanges on succession raised my immediate curiosity that would later lead to the research question and the project on which this piece draws.
The then National Guidelines were clear: we clergy appointees were not there to push our own denominational barrows. Still, I became curious about what was really going on in the minds of others who served HRECs interchangeably from a range of faiths and traditions regardless of often-irreconcilable theologies in the ‘pastoral chairs’. My interfaith work meant I was confident that, in the event of content matters being beyond my own repertoire, I would have an extensive network from which to seek expert guidance if asked to do so. But HREC appointment provides an opportunity to serve far beyond the specifics of faith content occasionally referenced in research applications.
I became aware that the recruitment of ‘the pastor’ in other committees was not always simple. I had been spotted at a meeting about chaplaincy in women’s prisons! How had others been identified and invited to join committees? What constituted their self-understanding of the ministry service being gifted to the committees they served? Would my interviews disclose any kind of ‘evangelism by stealth’? Did faiths or denominations target access to committees assessing large amounts politically/theologically/ethically sensitive, kinds of research?
I discovered no documents showing the means by which the Catholic Church became an early adopter of the opportunity to be represented, but clearly there were Catholic clergy leading the discussion in the early years. My research showed great diversity within the voices of the Christian ministers. Even within denominations, including between current serving Catholics, there was diversity of expression on ground-breaking issues. It became clear that the one participant who asserted his role as being to represent the Catholic position, was the exceptional Catholic voice. Other Catholics applied the provisions of the current National Statement informed by their own faith understanding, but with broad appreciation for other communities’ concerns.
Many clergy enjoyed the intellectual effort of meeting preparation and assessing applications, perhaps indicating a somewhat obsessive character trait. The rigor of disciplined meetings, the collegiality with co-assessors and committee colleagues was experienced by many as a valued counterweight to congregational demands. When appointed, some experienced a bit of resistance and some took a gentle ribbing. But as they became known and trusted on their merits and performance, tenures were frequently extended. There was some inference that if individuals had theologies unable to embrace the content or methodologies required in assessing projects, it would be unlikely that they would find their way onto committees. A few references to short tenures alluded to non-renewal of clergy who were not a good fit.
The diversity of appointments reflects the neighbourhoods/communities served by HRECs and is appropriately representative of our national diversity. One participant was from a highly conservative evangelical denomination. The interview triggered deeply thoughtful reaction about personal identity relative to the HREC work. I would later find out that the reflection resulted in some major theological grappling as a consequence of the conversation. Regardless of denomination, interviewees found themselves intrigued by the attention my investigation was bringing to HREC clergy/pastoral work, which had almost invariably been out of the faiths’ hierarchical spotlights. Most remained entirely grateful for the freedom to do the HREC work without such attention.
One pastor described choosing not to participate in a committee discussion because he was aware his personal knowledge was not sufficient. It was a frank admission. The example begs the question of how applications need to enable comprehension and how lay and other non-disciplinary experts are enabled in their roles. Others found solutions to specific matters of dogma by offering wordings that would provide enough cues to the faith’s adherents to ensure they were going to be able to make informed choices without imperilling projects. What emerged was that clergy were clear about their denominational obligations and the tension between them and the needs of others in the general community.
Given that the task of assessing applications and contributing to meetings is identical for all HREC members, how do clergy understand themselves alongside their colleagues (who may be harbouring strong religious views but are not required to disclose them and which need not be presumed) as contributors to the wellbeing of the research landscape? Several clergy described pastoral care for committee colleagues and secretariat staff, by virtue of regular contact with them. This was implicit and automatic pastoral work. Care for researchers and participants whom the HREC members will never meet, is also natural pastoral work and a clear driver for clergy in their appointments.
Serving HRECs also provides clergy with a window to unfolding knowledge, a forward-looking perspective, regular use of critical faculties not always appreciated in congregational work, intelligent company, confidential settings in which they can be full participants without any oversight from their hierarchies resulting in contributions that don’t need to follow predictable, dogmatic lines, and a chance to serve beyond the faith or denomination. Australia has encoded high standards for itself in the research domain. Participants in my research were clear that high ethical research standards fit congruently into their understanding of their ministry work and several specialise in HREC work as their ministry interest. Many of these have high-level academic qualifications and years of expertise, which are offered repeatedly to the Australian community through HREC service.
Rabbi Dr Aviva Kipen has held Monash University HREC appointments and served on the Victorian Bio-Ethics Advisory Committee. She returned to serve a second term on the Australian Health Ethics Committee of NHMRC in 2019 and has begun the current triennium for the Victorian DHHS HREC. All comments reflect material in the thesis Kipen, A. (2015) Serving God and The Commonwealth of Australia: The Ministry Experiences of Clergy in Victorian Human Research Ethics Committees. Melbourne: University of Divinity.
Dr Gary Allen MS Qld Ambassador | AHRECS Senior Consultant | Member NS s4 review committee Natalie Walsh MS Qld Community Engagement Manager
Participation in ethical human research often provides four positive opportunities for persons living with MS:
(i) A welcome distraction from the sometimes-cruel realities of living with this progressive neurological condition.
(ii) An opportunity to provide insight into the practical challenges of symptoms that may be invisible to observers other than family, close friends and carers, and to give voice to the experiences of persons who are disenfranchised.
(iii) Access to whatever benefits are anticipated as a result of a project.
(iv) An opportunity to make a positive contribution to the body of knowledge and/or other public good.
The exclusion of people living with MS from research is a concern with regard to the ethical values of Justice (e.g. NS 4.5.3) and Beneficence because it denies access to the benefits described above, on the grounds of a disability. It is also a merit and integrity concern because, if a section of the community is excluded from a research project, there is at least the possibility the results might be different for people living with MS.
Prevalence in society In Australia 1 in 5 people live with a disability. The average age of people diagnosed with MS is just 30 and 3 out of 4 are female.
On average, more than 10 Australians are diagnosed with MS every week. There are over 25,600 people in Australia living with MS, including 4,970 Queenslanders and the condition affects each person differently. The progress, severity and specific symptoms of MS cannot be predicted. MS is a lifelong condition for which a cure is yet to be found. However, doctors and scientists are making discoveries about the treatment and management of MS every day.
MS is one of the most common chronic neurological conditions of the Central Nervous System and may affect the brain, spinal cord and optic nerve and impacts more young people in Australia than any other chronic progressive neurological disease.
Symptoms and research It is important to note that the symptoms associated with MS can be different differ in both presentation and severity for each individual.
Symptoms of MS will vary and are unpredictable. No two people will experience the same symptoms to the same degree. Symptoms can come and go, and can also be affected temporarily by other factors such as hot weather or an infection.
Although MS can cause a wide variety of symptoms, most people only experience a small number of these. For most of the common MS symptoms, there are now many effective forms of symptom management. It is also important to note that the symptoms listed here are not exclusive to MS and can appear in many different neurological conditions.
The symptoms of MS can be both visible and invisible to others and include:
Changes in memory, concentration or reasoning
Slurring or slowing of speech
Extreme tiredness (unusual fatigue): a debilitating kind of general exhaustion and weariness which is unpredictable disproportionate to the activity
Visual disturbance, including blurring of vision, double vision (diplopia), inflammation of the optic nerve (optic neuritis), pain and (rarely) loss of vision
Dizziness and vertigo
Emotional and mood changes
Pain
Altered sensation, such as tingling, numbness or pins and needles
Altered muscle tone, such as muscle weakness, tremor, stiffness or spasms
Difficulties with walking, balance or coordination: – these include loss of balance, tremors, unstable walking (ataxia), dizziness (vertigo), clumsiness of a limb, lack of coordination, and weakness (affecting in particular the legs)
Sexual changes
Bladder and bowel changes
Sensitivity to heat and/or cold
Exclusion The exclusion of persons living with MS can typically occur in one of two ways:
(i) Intentionally because of the perceived vulnerability of the population, especially if an individual’s symptoms include impact on executive function, such as cognition and memory.
(ii) Unintentionally ……..a. because the research activities don’t accommodate the limitations imposed by an individual’s symptoms. ……..b. because communication is not extended to the networks outside of the research community.
Empowering and enabling participation The exclusion of persons living with MS from research should be limited to circumstances where an individual’s symptoms would confound the collected data (e.g. a person with a severe intention tremor in their lead hand is unlikely to be able to quickly draw a shape they saw) or where they are especially vulnerable to harm (e.g. high-intensity exercise when their symptoms include autonomic impact on their cardiovascular system).
Rather than excluding potential participants who live with MS, researchers and review bodies are encouraged to consider:
(i) Whether the complexity of the research and nature of the risks are such that the competence of potential participants should be established. This might be explored in a simple conversation, as is recommended by paragraph 4.5.10 of the National Statement, e.g.
…….a. in the case of low risk anonymous data collection, accepting consent without establishing competence.
…….b. considering strategies to scaffold consent and respecting the wishes of individuals, even if substitute consent is required.
…….c. including a support person to provide individual assistance to participants
(ii) Conducting testing in a cool and bright location and at preferred times, such as mornings.
(iii) Allowing participants to request rest breaks with refreshments available
(iv) Supporting screen readers and closed captioning.
(v) Supporting suitable interface controls other than a mouse.
(vi) Reimbursing transport, parking or companion costs if travel is required.
Reference groups The establishment of a reference group can be a valuable way to explore whether the anticipated benefits of a project are perceived as justifying the risks (as recommended by paragraph 2.1.5 of the National Statement), whether the support strategies are sufficient, and whether the language of the recruitment and consent materials are appropriate.
References: National Statement on Ethical Conduct in Human Research (2007 updated 2018)
The senior consultants started AHRECS in 2007. We were looking for a way of responding to requests for advice on research ethics and integrity from the government, health and education sectors read more...
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Random image from the AHRECS library. These were all purchased from iStockPhoto. These are images we use in our workshops and Dr Allen used in the GUREM. Less
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