This column has looked at the variety of ways in which data is harmfully gender segregated and neglects to accurately represent people of all genders, leading to ineffective cityscapes, harmful medications, and ill-fitting uniforms for non-male people.
In this issue, I would like to bring to light the myriad of other identities that are often under-accounted for or are missed entirely in research and data collection.
According to the 2019 report, Discerning Disparities: The Data Gap by Henrie M. Treadwell, PhD Marguerite Ro, PhD, et. al., in 1985, the “Public Health Service Task Force on Women’s Health Issues concluded that the historical lack of research on women’s health concerns compromised the quality of health information available to women as well as the health care they receive.
Since the publication of that report, there has been a transformation in women’s health research—including changes in government support of research, in policies, in regulations, and in infrastructure […]” We can see that while data’s gender gap is a complex and important issue that affects over half of the world’s population, there is awareness being spread and progress being made to move the issue forward. This is unfortunately not the case (at least, not to the same extent) with all demographic data gaps.
The aforementioned article, Discerning Disparities: The Data Gap, goes on to state that “the poor, and poor men of color particularly, begin a descent to invisibility and separation that has been witnessed since the early days of this nation.” This is due to a number of readily apparent and tangled causes. One of the most standard ways of collecting data for a research project is by holding focus groups. You may have seen ads for focus groups on the subway (i.e. “Do you have a mental addiction to marijuana?”, “Does early onset Alzheimer’s run in your family? Contact us for the possibility of partaking in an eight-week study that may or may not result in compensation!”) or received calls asking you to visit a university for a day and answer questions in a group.
Let’s consider why the data gathered from these studies may not be representative of the general population. These studies often require attendees to have consistent availability on weekdays and the ability to travel to a specific location. A quick Google search for focus groups in my area yielded a list of such groups at Columbia University’s Department of Psychiatry, only some of which advertise payment. The stated payment ranges from “travel reimbursement” to “up to $240” for two days’ work, $240 being exactly New York City’s minimum wage. Who has the free time to complete unpaid or “up to” minimum wage labor on a sporadic, short-term schedule? Due to structural racism and wealth gaps, the answer is largely financially comfortable, mostly white people. This leads to financially diverse and representative data being difficult to obtain.
You may have heard of researchers seeking focus groups for experimental medications. These groups are crucial to create trust in the general population regarding medicine and determine needs related to specific drugs. However, there are multiple demographics of people who are mistrustful in experimental medicine, and rightfully so. Underprivileged groups have been used against their will for medical experiments for centuries, from frostbite experiments done by Japan’s Unit 731 during the Second Sino-Japanese War to Nazi scientists attempting to change prisoners’ eye color in concentration camps during World War Two.
In the United States, African Americans have historically been exploited for such studies, the most famous of which perhaps being the Tuskegee Syphilis Study, which is noted in More than Tuskegee: Understanding Mistrust about Research Participation as being “[…] widely recognized as a reason for mistrust because of the extent and duration of deception and mistreatment and the study’s impact on human subject review and approval.” Thus, groups with a history of exploitation may self-select opting out of research. While it is completely understandable and within their right to do so, this can lead to dangerous issues in data usability later on. More than Tuskegee: Understanding Mistrust about Research Participation goes on to state that “Despite mandates by the federal government to ensure inclusion of women and minorities in all federally funded research, African Americans continue to participate less frequently than Whites. Lower participation rates among African Americans have been reported across various study types […]” which can unfortunately lead to less effective treatments for underrepresented populations.
Combatting this is a complex issue, as medical mistrust can be deeply ingrained and research participation out of reach for many who live across socioeconomic lines. In future issues of this column, we will begin to examine the work being done to create trust and accessibility in the research and data communities.