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  • Madi McMichael

Hypothetically, let’s claim that not all patients receiving health care are treated equally. I know, as a pre-health student, this claim is outrageous because the medical field must be full of the perfection, rainbows, and butterflies I imagined when I first wanted to become a physician. How is it conceivable that the infant mortality rate of Native American and Alaskan Natives is 60% higher than that of the white population? Or that African American men are 30% more likely than white American men to die prematurely from cardiovascular disease? Even that minority women are less likely to avoid seeing a doctor due to cost? As much as I hate to pop the bubble that is our fantasies about medicine, racial and ethnic disparities are very real problems that the healthcare industry faces and that must be addressed to achieve equitable treatment.

According to the CDC, a large aspect of health is accredited to social determinants, which are the economic and social conditions that influence the health of communities and people. Examples of social determinants include early childhood development, quality of education, job security, food security, access and quality of health services, adequate housing, social support, language and literacy, incarceration, access to technology, and many more. Many of these factors have inherent racial implications through the history of structural and institutionalized racism within the United States; one such example of historical influence were the Jim Crow laws from the early 19th century that established barriers toward job security, housing, and equitable education. What this means is that many of the statistical disparities we see are not necessarily genetically tied to different races, but rather are the cumulative effects of sociopolitical inequalities.

Even more concerning are the racial and ethnic health disparities that relate to the psychological stressors of experiencing racial discrimination. Namely, ‘mixed race’ children with a Black mother and a White father have higher rates of low birth weight than children with a White mother and a Black father (Tashiro, 2020). This outcome is attributed to the psychosocial stressors of racism that Black mothers experience and pass down through epigenetics, the study of changes in gene expression through environmental exposures. There are numerous ways in which racial/ethnic minorities experience racism--these include systemic and institutionalized racism as well as direct, face-to-face discrimination such as racial slurs, unfair treatment, and violence. Exposure to racial discrimination has been proven to be associated with poor physical health, substance abuse, and mental illness (Tashiro, 2020), and there are a variety of health issues related to direct experiences with racism. Some of these include elevated blood pressure, abdominal obesity, breast cancer, heart disease, premature death, increased anxiety and depressive symptoms, and elevated stress hormones in teenagers (Tashiro, 2020). It is also important to note that although there is no biological basis for race, the impacts of racism in healthcare are apparent and serve to emphasize the importance of continuing to acknowledge and mitigate health inequities. Without these conversations, how do we ethically contribute to and work towards a system that disproportionately disadvantages entire communities?


Ultimately, as many of us continue on in our education in health care, it is important that we address the social factors that have led to the inequities we see in the medical field today. As much as O-Chem and genetics are valuable knowledge for pre-health students to master, we can’t leave behind the important social factors that shape how patients experience and perceive health.

As much as I would love to stay in the bubble of my childhood fantasies about medicine, the reality of these ingrained problems serves as a reminder to all of us of the work that needs be done to create a system of accessible and quality health care for all people regardless of their race, ethnicity, or socioeconomic status.





References:

Crowley, Ryan. “Racial and Ethnic Disparities in Health Care.” Racial and Ethnic Disparities in

Health Care, Updated 2010, American College of Physicians, 2010,

www.acponline.org/acp_policy/policies/racial_ethnic_disparities_2010.pdf.

“Frequently Asked Questions.” Centers for Disease Control and Prevention, Centers for Disease

Control and Prevention, 19 Dec. 2019, www.cdc.gov/nchhstp/socialdeterminants/faq.html.

Sciences, National Academies of, et al. “The State of Health Disparities in the United States.”

Communities in Action: Pathways to Health Equity., U.S. National Library of Medicine,

11 Jan. 2017, www.ncbi.nlm.nih.gov/books/NBK425844/.

Tashiro, Cathy J. “Race, Racism, Ancestry and Health: Implications for Mixed Race People.”

Global "Mixed Race" Studies. 15 Sept. 2020.

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The first time I witnessed someone using a “keyless” car, I was astonished. They could simply walk up to their car, open the door, press a button, and the car would start. When I tried to recreate this magic for myself, I quickly realized that I couldn’t even get into the car, let alone take it for a joyride. I was so amazed by this new technology that I didn’t stop to realize that it only worked for the person who had the key, even if said key was nowhere in sight.

When it comes to medical innovations, the confusion that I experienced around the keyless car is a sentiment commonly felt by much of the technology’s target population. So much effort is put into the research and design process that by the time we get to the implementation phase the idea has been stripped and rebuilt so many times that we forget to ensure that it can be used by the very people we claimed to be designing it for.

While this is common in almost every arena, my current focus is on the newly developed technique of in vitro gametogenesis (IVG). The basic idea of IVG is to recreate the process of gametogenesis outside of the human body. Normally the body creates either specialized egg or sperm cells, and during reproduction, the sperm fertilizes the egg that will eventually become the embryo. This technology is still in the research and design phase, but that is precisely why it’s so important to have this conversation now. IVG is currently being discussed as a revolutionary possibility for cisgender same-sex couples[1], but I worry that in reality, it may never serve this target audience in the way that it is currently projected to.

Navigating fertility as a queer person often involves a series of hoops to jump through, and unfortunately, this issue can be exacerbated by the very innovations that we thought would help. Imagine that someone buys you a new car (IVG technology), but they never give you the key (a straightforward path to said technology that doesn’t involve peeling back layers upon layers of bureaucratic red tape). There is no point in having a car without the key, so you call the dealership (insurance company) and explain your situation. They tell you that you are in luck because they help people with key replacements all the time. The only caveat is that they require you to confirm loss of the key (infertility) by searching for it (trying to conceive naturally) for a period of time before they will be able to help you. You explain that you never had the key in the first place (could not physiologically conceive a child naturally), but they insist that this is simply their policy for new vehicles (innovative technologies).


From an ethical standpoint, is it enough to develop the new technology and stop there? Is it enough to innovate with hopes of helping specific communities if we never make sure that said innovations get to them? My stance is simple: No. Innovation is an important step, but it isn’t the final one. Just because we build it does not mean that the people who need it most will be able to use it. It is our moral responsibility to do everything in our power to alleviate the barriers to our technology, not to stack them higher. I’m hopeful that IVG will be what breaks the current pattern and that it will one day deliver on its promises to the queer community.


In short, if you give someone a car, make sure you give them the key too.



[1] Spar, D. L. (2020, August 12). The Poly-Parent Households Are Coming. Retrieved September 12, 2020, from https://www.nytimes.com/2020/08/12/opinion/ivg-reproductive-technology.html

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Q. Could you introduce yourself and what you do as a faculty member at Duke?

A. I am a professor of the practice of Biomedical Engineering and Global Health. I teach classes in both biomedical engineering and global health, and my research is primarily focused medical equipment in resource-poor settings.


Q. In your experience in BME research as well as in the field, are there any unique ethical challenges that a biomedical engineer faces in their line of work?

A. Absolutely. The two that I think are the most prominent are that most medical equipment is attained through donations and the problem of field repairs. But let me talk about donations first. Donations bring up two problems. One is that the majority of donations do not work. This brings up a long list of ethical issues. But primary amongst them is what is your ethical responsibility when you’re donating something. Among the questions would be are you obligated to distribute information. How about manuals, manuals in language they can read and whatnot. How about supplies? There are three major players in all donations: the donor, the middleman, and the recipient hospital. And it is unclear where those responsibilities lie between those three players. And regarding field repairs. It is generally impossible to execute a eld repair of technologies to the same standards as a U.S. repair. Let’s say a piece of technology breaks in Kenya. Even in the capital city of Nairobi, it can be impossible to execute a field repair due to a lot of factors such as a lack of materials or diagnostic tools. This brings up a lot of ethical questions, primarily, is this acceptable? Is it acceptable to have a second standard of repairs in a remote site compared to the United States?


Q. Usually, with many of the innovations in health- care technology, you see that the richer patients are the only ones that can afford them. How can we guarantee that these innovations are accessible to people of all socioeconomic levels?

A. You cannot. That’s absolutely impossible. All medical technology enters the market in narrow slices. You can potentially change the slice that is first served to the neediest, to the poorest, or to the richest. But there is no way for medical innovations to enter the market accessible to all people all at once. There has been no desire to do that. Medical technology is introduced in niches and narrow categories intentionally. It protects the wider public from exposure to technologies that are defective. So that is not going to change. Technology is always going to be introduced into narrow slices and eventually into wider slices.


Q. On a daily basis, how much of a role does medical ethics and patient autonomy play in your line of work?

A. Well every rollout of technology is subject to ethical review. We can’t introduce anything without ethical review. It’s huge. Everybody in a lab, every student, any person that is remotely touching a new piece of equipment has to go through ethical training. Ethics is a major chunk of what biomedical engineers have to address.


Q. So on that note, in the process of product roll- out, what is the typical ethics criteria that an ethics board goes through?

A. The first one that we encounter the most is consent, informed consent. That could be super tricky because you are going across language barriers and cultural barriers. Getting informed consent is the first priority usually. How are we going to inform and how are we going to get consent. After that, there’s the usual criteria such as bene t-risk ratios. But overall, informed consent provides the most challenge.


Q. In terms of medical technology, with the rise of systems such as electronic registration systems, do you see any concerns with the dehumanization of healthcare especially as doctors seem to be seeing their patients less and less?

A. No and yes. First off, most of what I do is in rural parts of the world. For instance, in the U.S. we have a program in West Virginia and also in other parts of the world such as Belize and Guatemala. In the rural parts where we work, most of our patients never see a doctor, so they already have zero contact. So what’s happening is that patient care is being pushed into lower cadres. Nursing assistants, traditional healers, etc. These lower healers, in terms of years of formal training, are what people are actually seeing. It isn’t particularly obvious to me that the number of contact hours for healthcare workers has changed recently. In fact, it may have gone up in some countries. the type of worker that the patient sees has changed, but the amount of time patients are being seen is actually go- ing up. And to address medical registration systems, I cannot see any influence. If anything the time patients are being seen has increased in developing countries as there is less paperwork.


Q. As a conclusion, what is the most important part about your eld of work that you’d like to emphasize.

A. All engineering, including BME, is done to help people. That’s why someone becomes an engineer, they want to make the world a better place. That’s why most of us get into engineering. For biomedical engineering that is done through healthcare equipment. From my perspective, it is the most exciting eld of engineering. I’ve been in engineering for a while, and in my time, BME has constantly been changing. It isa great eld, and I think we have succeeded largely in making the world a better place whether it be in treating polio or eradicating diseases like smallpox. Biomedical engineering has made a significant contribution to society.


Q. In light of all the achievements BME has helped accomplish such as the eradication of smallpox, what is the next step?

A. Well, there’s a couple of things. We’re seeing now a lot of developments in tissue engineering. There is going to be engineering of tissues such as cartilage, and there will even be more complex developments such as retinal replacements. Tissue engineering is going to be huge. Next, there is also engineering at the molecular level. We’re starting to see that in examples like CRISPR. But there is a lot more exciting engineering going on at the molecular level in instances like very targeted cancer treatments. The basis of pharmaceuticals for thousands of years has been finding molecules in the wild and refining them for drugs. But now, specific molecules are being developed artificially.


This interview was conducted and compiled by Paul Kim of Duke University



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DMEJ

   Duke Medical Ethics Journal