glia

Winter 2021 Recap

Perceptions and Repercussions

By Raisa A. Rahim

Winter 2021

 

SOMA’s reading group has continued the discussion of systemic barriers to the equity and inclusion of people from diverse and marginalized backgrounds, looking at these complex issues from biological, economic, and social perspectives. The following summaries and potential action-items are designed to further understand these obstacles and inspire change.

 

How have discriminatory structures, such as race, been historically conceptualized?

 

The documentary series “Race: The Power of an Illusion - Episode 1: The Difference Between Us" gave examples of the historical use and current applications of biometrics to explain (and invalidate) race-based differences in human social structures, particularly in America. An investigation of genetic polymorphisms has revealed that “roughly 85% of genetic variation can be found within a race” as opposed to “8%” among them, such that environmental factors are likely to be more predictive of population differences than genetic ones. But just because race is not biologically based does not mean that its effects are not real. Aside from the more explicit forms of oppression (e.g. Jim Crow de facto and de jure segregation and persecution; the eugenics movement’s forced sterilizations of “social undesirables”), these pervasive notions inform insidious systems such as community disinvestment and unequal resource and opportunity distribution. With this imbalanced economic playing field, the cycles of crime and educational and health disparities perpetuate. This makes the question of race as a biological factor especially difficult to disentangle from that of race as a social factor, obfuscating that these outcomes are correlational rather than causational. 

 

The episode highlighted that science is informed by society, just as much as the opposite is true. This is obvious in the aforementioned pseudo-scientific pursuits, but perhaps even more disturbing is that modern scientists still hold some of these race-defined views.  How can these views be addressed and eliminated? Simply presenting evidence may be insufficient to move the needle, so science communication needs to take an alternate route to facilitate thoughtful media consumption. Communicators need to find a way to package the conclusive evidence that race is a social construct in a form palatable to the public. This means spreading these myth-busting truths to young audiences, as well as developing media easily consumed by all. Learn how historical figures (Nightingale and Cobb) devised powerful ways to improve science dissemination and personally break through the narrative of “race as biology” burdening scholars from underrepresented backgrounds.

 

Race is a social construct - what are the implications and impacts of these forces on the lives of non-White individuals?

 

In a pair of articles written about the legacy of the HeLa cell line, we discussed the ethics of harvesting biological material. This colony was established by propagating Henrietta Lacks’ cancerous cells in the 1940s and ‘50s without her consent. This time was burgeoning with scientific discovery; but as regulatory mechanisms are often reactionary, ethical checks were not in place to keep up with these technological advances. This was further complicated by race-based power dynamics - non-White bodies have not held the same weight as those of White people. Though it was not illegal to take samples for research purposes without obtaining consent at the time the HeLa progenitors were acquired, the ethics of continuing to use the cell line need to be considered. It is true that these cells have been critical for making pivotal breakthroughs in science (which some family members take great pride in), but writing off the flagrant breach of privacy as being “for the greater good” does not mean it is the ideal. Unsurprisingly, Henrietta Lacks’s family did not receive any financial compensation from her unwitting contribution and continued to live impoverished lives (until recently). But what is a fitting level of compensation? While it is true that any money is better than no money, what monetary value can recompense the Lacks family for the initial and subsequent breach of privacy, given the one-sided royalty-free monopoly profited by tissue-harvesting companies? Moreover, what is the justification to keep using these cells, given the ethical dilemma and that there are several alternative lines? As scientists at the cutting edge, should we not strive to bring science forward in novel ways? As empathetic humans, should we not strive to make this progress equitable?

 

With advanced technologies being adapted and widely distributed for consumer use, bioethics are increasingly important to consider. What is our ownership over personal biological data once they are in someone else’s hands? Should people be compensated for the data their samples generate, given that it is no longer part of the corporeal self (e.g. 23andMe, etc.)? What would compensation look like? This would need to be done carefully, as such a program could potentially devolve into something out of an Ayn Rand novel. Financial privilege often follows racial lines, such that minority members may be especially hard-pressed to harvest their parts due to economic pressures. In any case, the importance of informed consent cannot be understated. Consent is valid only if it is “functional”, meaning that it is explicitly requested and is communicated in accessible and transparent terms. 

 

Given the importance of data privacy after collection, how can data be generated with the principle of diversity in mind?

 

In the paper “The importance of diversity in cognitive neuroscience”, the authors argued for the use of a more holistic approach to incorporating the principles of diversity in participant recruitment. Funding bodies such as the NIH and NSF have recently taken up this cause, but they argued it hasn’t gone far enough. While these institutions have increased pressure to recruit based on sex, they have not given other identifiers such as race, socioeconomic status, or gender identity adequate consideration. Reminiscent of an article we read in Summer 2020’s group, different groups perceive the same stimuli differently depending on their environmental context. Though there is evidence that there are biological differences between races, this cannot be taken as evidence that race is a biological construct. People cannot be viewed outside of their context (see Race: The Power of an Illusion section above), such that not integrating these factors into the experimental design averages out interesting variation in the perceptual experience. Which begs the question: should generalizability be the goal of science? Scientists working with humans might think these factors are not relevant to their work, but any human research is a product of the participants’ heterogeneous experiences and has possibly unexpected cognitive effects. Not acknowledging this fact at its least harmful leads to discounting varied experiences; at its most harmful, it propagates pervasive stereotypes and the continuation of the discriminatory status quo.

 

So how might we address this issue? If there is to be a greater push to include people of diverse (on several factors) backgrounds, that means reaching out to minority groups who may have historically-rooted suspicions of scientists. Some potential ways forward are to diversify academia in terms of both recruitment and retention, particularly in these science-hesitant populations, in order to build a rapport with those communities. That said, this poses a methodological challenge: siloing effects by demographic categories strains statistical power. Though the unequal access to the necessary technology needs to be addressed, this is where crowd-sourcing and online data collection platforms are so powerful. While not all types of data can be collected this way (though academics are developing paths forward in therapy accessibility), these behavioral results can be used as a proof of concept to inform later collection done in the laboratory, where the subject pool may be more homogeneous. 

 

How can the workplace be changed to be more inclusive of diverse scientists?

 

In the recently published paper “Systemic inequalities for LGBTQ professionals in STEM”, the authors collect survey data on various factors related to workplace inclusion and well-being in STEM, from both professionals identifying as LGBTQIA+ and not. Though the researchers collected data from a large cohort of people (N = >1000), the self-selecting respondents claiming this identifier comprised only a fifth of participants. Coupled with broad categorization of transgender individuals as belonging to their newly presenting sex, the work may have averaged across meaningful heterogeneity of experience relative to heterosexual and cis individuals. As stated in another article, queer professionals tend to not reveal their sexuality in the workplace to avoid a variety of negative outcomes, reminiscent of the code switching article from the Summer. If these individuals need to effortfully hide an aspect of themselves, this effort cannot be used to be productive in the workplace. Equity and inclusion are not just social issues - they are economic ones, as well.

 

Data collection should be mindful of the unique experiences of populations they are drawing conclusions from. As this research group did, scientists gathering demographics data should seek advice in developing the materials (from professional societies, familiar diverse individuals, etc.) so as to build rapport with respondents and ensure a balance of clarity and sensitivity. To promote privacy beyond de-identifying data, it might be wise to have several layers of abstraction and increase the sample size of collected data, where the analyzing body is more centralized than, for example, a program coordinator. Universities and programs should explicitly state their stance on integrating inclusion practices… and then keep the promises made. Learn about potential infrastructure changes in higher education that could make all the difference.

 

~

 

Thank you for the enlightening conversations this quarter. You can find more information about SOMA events and materials on our website. We hope to see you in the Spring!