How to be Opportunistic, Not Manipulative

By Nathan Ahlgrim

Opportunistic Research

Government data is often used to

answer key research questions.

Image courtesy of the U.S. Census Bureau

Opportunistic research has a long and prosperous history across the sciences. Research is classified as

opportunistic when researchers take advantage of a special situation. Quasi-experiments enabled by government programs, unique or isolated populations, and once-in-a-lifetime events can all trigger opportunistic research where no experiments were initially planned. Opportunistic research is not categorically problematic. If anything, it is categorically efficient. Many a study could not be ethically, financially, or logistically performed in the context of a randomized control trial.

Biomedical research is certainly not the only field that utilizes opportunistic research, but it does present additional ethical challenges. In contrast, many questions in social science research can only be ethically tested via opportunistic research, since funding agencies are wary of explicitly withholding resources from a ‘control’ population (Resch et al., 2014). We, as scientists, are indebted to patients who choose to donate their time and bodies to participate in scientific research while inside an inpatient ward; their volunteerism is the only way to perform some types of research.

Almost all information we have about human neurons comes from generous patients. For example, patients with treatment-resistant epilepsy can have tiny wires lowered into their brains, a technique known as intracranial microelectrode recording, enabling physicians to listen in on the neuronal chatter at a resolution normally restricted to animal models (Inman et al., 2017; Chiong et al., 2018). Seizures, caused by runaway excitation of the brain, are best detected by recording electrical signals throughout the brain. By having such fine spatial resolution inside a patient’s brain, surgeons can be incredibly precise in locating the site of the seizure and treating the patient. It’s what else those wires are used for that introduces thorny research ethics.

Image courtesy of Wikimedia Commons.

Those wires are already down there, so why not put them to even more use? Scientists dream of poring over the treasure trove of patients’ data. It’s a precious, and rare, resource. The elephant in the room, especially for practitioners of basic research, is that basic research is not expected to directly benefit the individual patient. Any scientific gain may help people in the years to come, but it will not affect that individual patient’s prognosis. Unlike studies trying to optimize deep brain stimulation (DBS) for treatment of Parkinson’s Disease (Müller and Christen, 2011) or depression (Dunn et al., 2011), basic research exists for the sake of science, not patient welfare. With fewer concrete benefits to the patient, the risk to benefit calculation becomes trickier.

Human neuroscience research like this is almost always expensive and demanding. That does not mean, however, that these experiments can be low priority. Our prodigious knowledge of the nervous system is only surpassed by our ignorance of it, and treatments for some of the most pressing health concerns of our time depend on research like this increasing our knowledge. Of course, such a strong motivation to innovate can blind scientists to the need to also protect their research participants, which is why specific ethical standards for opportunistic research need to be robust and ready.

Physician-led Opportunism

In the physician-patient relationship, the power dynamic lies in favor of the physician. Most physicians recognize and accept this dynamic when it comes to healthcare. Even so, many fail to appreciate that the power dynamic does not disappear when the conversation changes topic; the physician remains the physician even when she talks to her patient about non-therapeutic research.

Image courtesy of SVG Silh.

Non-medical invasive brain research, like that using intracranial recordings and brain stimulation in epilepsy patients, is admittedly a niche area. Since it has no immediate
implications for human health, it receives far less publicity and
public scrutiny than clinical trials or even promising treatments in
animal models (Fang and Casadevall, 2010). Although the purpose of basic
research is distinct, it can still benefit from the lessons learned on
the medical side. Clinical human neuroscience research shows that the ability to consent does not guarantee that the decision to consent is a voluntarily one (Swift, 2011). In the shadow of the physician-patient power dynamic, would-be participants can become situationally incapacitated even while retaining full mental capacity (Labuzetta et al., 2011). In effect, their position as a patient, the physician-patient relationship, and the overlap between medical and research practices can all render the patient incapable of freely giving informed consent. Although the mental state of the patient may be sound, many argue that they must be protected just like those who lack the mental capacity to consent on their own behalf. The fear is that any hint of the research influencing the medical care, or even the absence of addressing that interaction explicitly, can force the patient’s decision.

Of course, there is also a strong argument that consent, even if not fully voluntary, can be ethically valid. Even proponents of the so-called Autonomous Authorization criterion, under which consent is only valid when given intentionally, with full understanding, and without controlling influence (Faden and Beauchamp, 1986), often amend or bend those strict guidelines to make them practical (Miller and Wertheimer, 2011). Autonomous authorization can be eroded because of therapeutic misconception of research, when potential participants are influenced to enroll in a study due to confusion between research and medical treatment (Appelbaum et al., 1982). For instance, patients may enroll in a study testing a potential drug to treat Alzheimer’s Disease because they believe they will not be placed in the placebo group given their advanced condition. That is not how randomized control trials are designed. Patients’ misunderstanding inflates the benefits in their mind, which could sway their decision to participate. Yet the demand that all patients be fully knowledgeable before their consent is deemed valid may be too rigorous to be practical, and end up an unrealistic burden to place on researchers. Critics of the Autonomous Authorization model claim that responsibility for protecting patients resides in institutional safeguards (i.e. Institutional Review Boards [IRBs]), not the researchers themselves. With strong institutional standards in place, patients’ best interests can still be protected even if they give non-autonomous consent. That is, at least, the argument. How those safeguards are designed is the determining factor of their effectiveness.

How to Keep Consent Voluntary

We cannot pretend that the physician-patient power dynamic does not exist, or that every patient will become an expert in the research program they sign up for. Still, proactive steps on the institutional and personnel sides can protect participants and make sure they enroll because they want to, not because they feel they have to. The need for such protections is compounded by the specifics to invasive brain research, whose entire participant pool lives with a treatment-resistant brain disorder severe enough to merit invasive brain surgery. It is our unfortunate reality that stigma looms over people living with brain disorders, both external (from others) and internal (self-perception) (Corrigan et al., 2006). Stigma surrounding brain disorders weakens personal empowerment (Corrigan, 2002), tipping the balance of power even more strongly towards the physician and research team. The protections put in place for these participants must be comprehensive and robust to rebalance the relationship.

Teams performing invasive brain research have already made a series of recommendations to directly address the unique environment of non-medical invasive research using human patients (Chiong et al., 2018). Their recommendations are strong and worth implementing, but they fall short because of a common blind spot: they are still thinking like researchers, not patients.

Image courtesy of Pixabay user Catkin.

As a patient, you might be coerced to consent to any research protocol put in front of you out of fear that your medical treatment is dependent on it. You don’t even need to be a cynic who expects the worst out of your physician to fear this. After all, your physician will probably take more of an interest in you, and you’ll get more face time with her, if you sign up for her study. Yes, preferential treatment is wrong, but self-defense against improper treatment requires self-empowerment, something that is often degraded in these patients by the stigma following their brain disorder. To minimize potential coercion, physicians should at the very least complete the consent process as part of a team, alongside people not involved in the patient’s care. Of course, the coercion patients feel would be minimized if their physicians were completely absent during the consent process to minimize any implicit coercion, but such requirements are often impractical. Both medical and research personnel should also be required to explicitly state that medical care will not change for the better or worse regardless of research participation. These statements must be unequivocal, and repeated before, during, and after the consent process.

Even as I and others lay out a list of criteria for researchers to meet, it is important to stress that research teams cannot rely on a one-size-fits-all consent process. Individualization is especially necessary when researchers are working with a vulnerable population dependent on their care. The capacity to consent to medical interventions (which get the patient into the ward in the first place) does not imply the capacity to consent to research interventions. Even after patients do consent, their medical condition can fluctuate, as can their desire to participate. Just like with medical treatment, consent at the start of a project (no matter how ethically it was obtained) cannot be used to rubberstamp the entire study. Such protections are already given to psychiatric patients (Palmer et al., 2013), showing that the best consent is one that is renewed.

Institutional criteria can help bolster these practices, but relying too much on them is dangerous. After all, institutional priorities can bias the definition of “patient interests” and preferentially validate non-autonomous consent that aligns with institutional interests over the individual patient’s interest. Both personnel and institutional approaches fail to fully protect the patient/research participant dual role, which is why the two must work in tandem. It is far too easy for researchers to capitalize on a patient’s therapeutic misconception because it produces the desired outcome, even when the deception is unintentional.

Image courtesy of Wikipedia.

As a patient, being told your medical care is protected regardless of your research participation is not the same as believing it and trusting it to be true. Doubt may be unavoidable, and it is not preferable, but it should also not prevent the study from happening. Invasive brain research can only happen in specific and intensive situations, but it is absolutely necessary to the progress of neuroscience and medicine. Everything from epilepsy to Alzheimer’s Disease to autism is informed by and better treated because of invasive brain research.

Patients will be protected when physicians are trained to not display favoritism to their research participants and IRBs shape research protocols to fairly balance a participant’s risks and benefits. They will be protected even if they do not understand the research as well as the research team. Science does not have to stop until the public are all scientists. Scientists do, however, need to protect non-scientist interests, even when it feels like doing so gets in the way of progress. The discussion of the ethical challenges is not meant to detract that we, as a society, need this kind of research if we hope to continue improving overall health. The brain is boundlessly complex, and we do not understand it well enough to adequately treat those who need it. In short, our deep ignorance of the brain’s inner workings requires deep, and sometimes invasive, research.

________________

 Nathan Ahlgrim is a fifth year Ph.D. candidate in the Neuroscience
Program at Emory. In his research, he studies how different brain
regions interact to make certain memories stronger than others. He strengthens his own brain power by hiking through the north
Georgia mountains and reading highly technical science...fiction.









References



Appelbaum PS, Roth LH, Lidz C (1982) The therapeutic misconception: Informed consent in psychiatric research. International journal of law and psychiatry 5:319-329.



Chiong W, Leonard MK, Chang EF (2018) Neurosurgical patients as human research subjects: Ethical considerations in intracranial electrophysiology research. Neurosurgery 83:29-37.



Corrigan PW (2002) Empowerment and serious mental illness: Treatment partnerships and community opportunities. Psychiatric Quarterly 73:217-228.



Corrigan PW, Watson AC, Barr L (2006) The self–stigma of mental illness: Implications for self–esteem and self–efficacy. Journal of Social and Clinical Psychology 25:875-884.



Dunn LB, Holtzheimer PE, Hoop JG, Mayberg HS, Roberts LW, Appelbaum PS (2011) Ethical issues in deep brain stimulation research for treatment-resistant depression: Focus on risk and consent. AJOB Neuroscience 2:29-36.



Faden RR, Beauchamp TL (1986) A history and theory of informed consent: Oxford University Press.



Fang FC, Casadevall A (2010) Lost in translation—basic science in the era of translational research. Infection and Immunity 78:563-566.



Inman CS, Manns JR, Bijanki KR, Bass DI, Hamann S, Drane DL, Fasano RE, Kovach CK, Gross RE, Willie JT (2017) Direct electrical stimulation of the amygdala enhances declarative memory in humans. Proceedings of the National Academy of Sciences.



Labuzetta JN, Burnstein R, Pickard J (2011) Ethical issues in consenting vulnerable patients for neuroscience research. Journal of Psychopharmacology 25:205-210.



Miller FG, Wertheimer A (2011) The fair transaction model of informed consent: An alternative to autonomous authorization. Kennedy Institute of Ethics Journal 21:201-218.



Müller S, Christen M (2011) Deep brain stimulation in parkinsonian patients—ethical evaluation of cognitive, affective, and behavioral sequelae. AJOB Neuroscience 2:3-13.



Palmer BW, Savla GN, Roesch SC, Jeste DV (2013) Changes in capacity to consent over time in patients involved in psychiatric research. The British Journal of Psychiatry 202:454-458.



Resch A, Berk J, Akers L (2014) Recognizing and conducting opportunistic experiments in education: A guide for policymakers and researchers In. Washington, D.C.: U.S. Department of Education.



Swift T (2011) Desperation may affect autonomy but not informed consent. AJOB Neuroscience 2:45-46.



Want to cite this post?



Ahlgrim, N. (2018). How to be Opportunistic, Not Manipulative. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2018/10/how-to-be-opportunistic-not-manipulative.html

Doing Neuroscience, Doing Feminism: Interview with Dr. Sari van Anders

Dr. Sari van Anders

After attending the Neurogenderings Conference in Vienna, where participants debated whether it would be
possible to conduct feminist neuroscience research, I decided it would be
useful to interview an actual practicing feminist neuroscientist – and I knew
just who to talk to. Dr. Sari van Anders is an Assistant Professor in Psychology and Women’s Studies
at the University of Michigan. She earned her Ph.D. in Biological &
Cognitive Psychology from Simon Fraser University. In her social neuroendocrinology lab at the University of Michigan, she conducts feminist neuroscience
research on a variety of topics, with a principle focus on the social
modulation of testosterone via sexuality, partnering/pair bonding, and
nurturance. She has received grants from the National Institutes of Health
(NIH) and the American Institute of Bisexuality and has published articles in Hormones and Behavior, Archives of Sexual Behavior, and Psychoneuroendocrinology, among others.

I
asked her to talk about what she sees as feminist about her own behavioral
neuroscience research, how she has secured support for her work from other behavioral
neuroendocrinologists, and what advice she would give to early career
scientists who want to incorporate feminist concerns into their research. Read
on for Dr. Van Anders’ thoughtful and thought-provoking answers.

I have heard you
describe your research as a behavioral neuroscientist as ‘feminist.’ Can you
explain what you see as feminist about your behavioral neuroscience research?

Feminist science practice, like other aspects of feminism
(e.g., activism, praxis, theory, etc.), is not one thing. So the ways in which
I position my work as feminist may not be the same as the ways in which other
scientists might position their science, or the ways nonscientists might
position my work. With that caveat in mind, onwards! One important feminist
facet of my work is that I see science as one way to approach knowledge
creation/production, as opposed to the only way or the most valuable way.
Science can help us understand certain aspects of certain phenomena and is
valuable as such, but is more valuable when we recognize its limitations and
acknowledge the value of insights gained from other approaches.

Another important feminist facet of my work is that I see
vast gulfs of difference between bioscience and biologically determinist
thinking; so, I separate out natural from material, innate from trait, must
from is, etc. Our bodies and the biological systems inside of them are
recipients of socialization in the same ways our behaviors and cultural
practices are. Social modulation of hormones is a major thrust of my research
program… how could I (or we) think of our bodily systems as only preprogrammed
when we increasingly know how each biobody exists in a social context? A major part
of feminist thought critiques the split between gender and sex because it has
in large part left sex (i.e., biology; nature) as a fixed, natural, acultural
entity. Part of the work my research does is to expand notions of
sex/nature/biology such that we see biological properties as malleable and
socially located.

Another way my work is feminist is that I think about
inequities while I do my work, including how social location might affect the
questions I ask and my own understandings of phenomenon, but also how a gender
or intersectional lens might help me understand my findings better (which it almost
always does). Critically engaging with one’s positionality has been called
‘strong objectivity.’ Theory compelled me and my own research has convinced me
that objectivity works closer to how we want it to when we constantly engage
with and interrogate our own biases and positions.

My work is also feminist because it’s informed by feminist
thought, especially feminist science studies, even when the work is not focused
on gender/sex. It’s feminist because I don’t think that science leads to
simpler answers; I’m not, and I don’t think science intrinsically is (except in
practice), reductionist. I study hormones and this research often leads me to
explode phenomenological categories. For example, we found that cuddling
increased testosterone – and followed up by theorizing and studying both
cuddling and testosterone with fascinating and – to my mind – transformative
findings about both. Similarly, we found that sexual desire is linked to
testosterone in sometimes counterintuitive ways, which has led us to ask: what are people desiring when they desire? These
are far from reductionist implications, because they leave us with more
questions about hormones but also the social phenomenon we’re studying (rather
than simplifying them). The world is complex, and science helps us appreciate
how complex.

van Anders has found that cuddling can increase testosterone levels in women

Image from Flickr by malloreigh

I also see my work as
feminist because I think about it as community- and alliance-building. If
knowledge production were collaborative rather than competitive, what would it
look like? We try to build those sorts of relationships with colleagues, junior
and senior, to make science what we wish it could be (i.e., where we constantly
push at the clarity and meaningfulness of our understandings of phenomena
together, critically, constructively, enthusiastically, and connected to lived
experiences). Finally, I think of my work as feminist because the knowledge we
create is situated, as I and my lab
happily acknowledge that our findings make sense in this time and place because
they were produced in this time and place.

Can you say a little
bit about what you mean by “inclusive research and lab practices”?

I’ve been thinking about inclusive research and lab
practices since early graduate school, and I’ve come to define it for myself as
an ongoing process that involves thinking about how my lab operates, research
methods, and science communication approaches. I could go on and on about this,
and love to, but will limit this to some concrete examples. In the lab, e.g., I
think about how I recruit people, how I make clear the implicit and explicit
‘rules’ of labs and my lab for the people who work in my lab and come from
diverse backgrounds, how diverse perspectives will help us get closer to more
truthful and rounded knowledge. I think about how we treat each other in ways
that are respectful of difference, sameness, and culture, and are realistic
about power.

In my methods, I think a lot about how we recruit
participants and who feels welcome into science and why. I work hard to make
our studies places where people from rightly science-skeptical groups have a
place, for reasons beyond or unrelated to difference (while still making room
to honor those differences). So, posters, questionnaires, recruitment ads, etc.
How do we ask questions - and most of my research is quantitative – that honor
people’s lived experiences? That map onto people’s realities? That reflect
people’s autonomy and respect their self-identities? These are grand goals, and
we are obviously therefore continually striving to do better at the principles that
underlie them.

Inclusive questionnaires as a part of inclusive
research methods

In science communication, I think a lot about the ways I
write papers and the ways that I am allowed
to write papers (I get some pretty hostile reviews that limit my ability to
communicate certain ideas or in certain ways), how I involve my students (e.g.,
I have a lot of undergraduate co-authors, including first-authors on my
papers), whom I speak to at conferences, how I get involved in mentoring, etc.

So... I see inclusive research practices as trying to
provide a model of science that explicitly acknowledges that science is a human
endeavor and therefore political – and a
model that therefore works within a consciously-articulated and progressive
frame. So, inclusive research practices is kind of like saying that ‘the
personal is political and it’s not just Politics that are political’ but in a
science-y way, like: 'the day-to-day of science is political, and it’s not just
Science that is political.'

The fact that you
have received a number of major grants and have published your work in the
leading journals in your field indicates that you have managed to secure the
support of other behavioral neuroscientists. How were you able to get other
scientists to support your research?

“Coming out as
Feminist”:
Feminists come in all sizes

Image from Flickr by Daniel Morrison

Well, one strategy of many feminists in non-feminist-allied
disciplines (of which behavioral neuroscience is certainly one!) is to go into
stealth mode. I had a major strategy which was to build up a large body of
research and then one day be like: surprise! This was feminist all along! I
think I’ve adhered to this strategy somewhat, but there are cues that
scientists pick up on (‘radical’ things like using self-identification terms
for sexuality, using non-binaristic gender/sex language, incorporating social
location) and I think now I’ve been made. Also, it became increasingly
difficult to do the work while straddling a fence – like, have you ever tried
to do anything while
fence-straddling? – because that meant partitioning myself in uncomfortable and
inauthentic ways…I found that the more people could level Feminist! as an 'insult,' the more they would. As soon as I became more explicitly
feminist, it became hard for others to level ‘feminist’
as an insult. Sort of like coming out, as in sometimes people have more power
when they can insinuate something you’re not yet sharing. I also think that my
subfields – behavioral neuroendocrinology (BNE) and sex research – are
feminist-friendly in their own ways. BNE already pays a lot of attention to
sexual diversity and gender/sex, as well as social location in certain limited
ways (e.g., how poverty might affect stress hormones). So it’s less of a leap
to think about how other aspects of social location might matter. Sex research
also has some progressive traditions and elements, and I’ve been lucky in that
I see myself continually able to mine that vein of progressiveness in all my
colleagues. I think I’ve had a lot of privilege that I’ve been able to use too;
I am trained in neuroscience, I’m white, I’ve had financial safety nets, I’m
Canadian and now in the U.S., so I think my position has let me do a lot with
fewer roadblocks than others might experience.

I am not so naïve to think that merit is enough for
anything. But I do want to stake a claim to doing good work; I think I do great
work! People know that I love my work, and I think my enthusiasm is catching. I
think that my feminist approaches are intrinsically part of why my work is
great – feminist science is not just ‘good science’. Feminist science is more
than just good science, even while it also is
good science. So, the more critically engaged my science is, the better science I
produce.

I also think that I have worked extremely hard to be
bio-legible and speak to my colleagues in ways they will understand. I used to
think of my work as challenging/pushing/etc., but I now see my research program
as building/reframing/expanding. I think this noncombative approach is more in
line with how I’d like to see change happen when possible (‘be the change you
want to see’ sort of thing). And I think because I work within my fields but on
the margins, this insider/outsider status has given me a lot of space to do
what I do, but also others to be generous and supportive. I’m really careful,
too. I read book and article after book and article about the doing of science
in terms of the politics and management, etc. I’ve never believed that whatever
merit I do have will shine on its own as some sort of Sari-beacon, so I work
hard to connect with people who have shared interests in some way. I’m also
beyond extroverted (I’d way rather talk to a stranger than eat alone!) so that
makes it a pleasure to connect with people. And since science is done by and
with people, I think that this has helped too.

But you know, this question is hard to answer, especially as
I’m pretenure and still junior. I think I’ll have more perspective as time –
and I – march on.

How has your work
been received by feminist scholars and activists who are not scientists?

I often worry about how my work will be received by critical
scholarship audiences when I'm not there to situate it... and even when I am.
So it has been a really pleasant and welcome experience to find that folks from
across women's studies and critical scholarship seem to be really interested in
my work and, moreover, really extraordinarily generous. I think part of the
reason is that I really do listen to and am interested in what people have to say, and make changes in
my science. I think another reason is that I also try really hard to speak the
language. I think scientists are often worried about how their work will be
received and whether it will be attacked, like: why open up another front?! But I think critical thought and careful, conscious positioning go a
long way (in scholarship, and elsewhere!). Like I said about neuroscience, I
try to be biolegible. But I also often joke that I'm 'bilingual' because I can
speak to both groups and even joint groups, so I also try to be WS-legible. In part, I think this is because I
really truly understand that these epistemological approaches are so deeply
different that I can see where there's room for them to come together.

Do you have any
advice for students and early-career researchers who want to incorporate
feminist insights into their basic science research?

I can’t not recommend stealth mode. People are still so
misinformed about what feminist science would be that it could be such a major
and immediate stumbling block, especially to a junior person. I also can’t not
recommend authenticity. We all are most passionate about doing work that has
meaning, and I know those times when I’ve gone into deep stealth have been some
of the most professionally (and personally) deathly stultifying and unfulfilling times.

Sometimes stealth
mode is required

Image from Flickr by jeriaska

There are few guides to doing feminist science practice, but
I’m trying to build some – get in touch with me and others who seem like
allies. I’m also building a feminist science practice website just to
facilitate these sorts of alliances, so look for that! I have other more
prosaic suggestions: remember that you are the person on the ground, so you
have to make decisions that will
sometimes turn out to be wrong in ways you can only realize through
experience. Remember that no matter how grand your audience might be in your
imagination, you have to get through reviewers, editors, program officers, etc.
to get your work published and funded and that doing so involves negotiations
with your principles that not need to be positioned as ‘selling out’ to guilt
trip yourself. Finally, remember that what you’re doing is hard, because you’re
creating new knowledge (which is hard enough) but you’re also creating the ways
to create new knowledge, so be patient with yourself, excited at your successes,
and generous with your colleagues (and maybe also generous with yourself and patient with your colleagues).

Want to Cite this Post?

Gupta, K. (2012). Doing Neuroscience, Doing Feminism: Interview with Dr. Sari Van Anders. The Neuroethics Blog. Retrieved on
, from http://www.theneuroethicsblog.com/2012/11/doing-neuroscience-doing-feminism.html.