There are a number of reasons why that information is requested, and they’re not all related to keeping track of patient demographics. At its heart, race is a complicated concept. In our mainstream social climate, it’s often reduced to skin color, but in medicine, underlying genetics and geographical ancestry play a role. When it comes to practical concerns, all three of these issues are important for effective treatment.
Geographical Ancestry and Genetics
Susceptibility to several different diseases have been linked to where in the world our ancestors hailed from for years. It’s thought that this has links to the prevalence of certain diseases in different parts of the world, and can vary within continents.
Broadly speaking, people of European lineage are more vulnerable to skin cancer than those of African lineage, simply because their ancestors didn’t need the same levels of ultraviolet protection. That got passed through the generations in skin color. While dark skinned people can get also skin cancer, pale skinned people are more likely to with less sun exposure.
That doesn’t mean all people of general geographical descent have the exact same risk factors for diseases. Africa, for example, is a massive continent, and centuries of human occupation have developed different tolerances and vulnerabilities in the populations. Someone descended from people in Somalia will have subtly different genetic predispositions than someone with Libyan roots. The same goes for Egyptians and South Africans. Although someone whose family is from Ireland is considered white, and I’m considered white, my Jewish heritage and their Celtic roots can predispose us to different issues, just like an Aleut descendant from Alaska will have different predispositions from a Sioux descendant from Minnesota, although they’re both Native Americans. I’m sure the same is true for people from various parts of China, or India, or those from the Philippians versus those from Japan. They may all be considered Asian by some standards, but they’re not all exactly the same as each other.
In terms of medical diagnosis, this information could be handy in monitoring for some genetic diseases, like Sickle Cell Anemia in Sub-Saharan African descendants, Tay-Sachs Disease in Ashkenazi Jews and hereditary haemochromatosis (overabundance of iron in the blood) in Celtic descendants.
There is, however, a danger in taking this idea too far. There have been studies done in both the UK and the US on whether a mother’s immigration status makes her children more susceptible to autism than if she stayed in the country of her birth. The studies’ results conflicted with each other, which calls the social aspect of race into question.
A huge problem arises in the testing phase of many medications. Too often, the default race in testing new medications or treatments is those of European descent. This ignores potential differences in response to these new treatments by those descended from other parts of the world.
Heart disease medications are a good example. Years ago, it was discovered that black males didn’t respond as favorably to many common heart medications as white males of similar backgrounds did.
As a result, pharmaceutical companies formulated a medication with the black male in mind, and eventually had it approved for use by that specific population. This move is controversial, because tests were only done on black males, to the exclusion of other races and genders. They didn’t demonstrate whether the medication was more beneficial to that group than others, and the approval was seen as little more than a marketing ploy.
While testing in large groups of diverse races is necessary in the development and approval processes, medical practice must be done on a case by case basis. Each individual’s genetic makeup, environmental influences and medical history is more important to their treatment than broadly held beliefs about their race.
As problematic as under representation of various races in testing is, social position is more so when it comes to real world medical treatment.
Certain doctors are more likely to diagnose a black child with autism as having a behavioral problem than as autistic, thus denying them the therapy they so desperately need. The reverse could conceivably be true for white children, with equally detrimental consequences.
Miscommunication between groups can also be the culprit of improper diagnosis. A medical professional informed of behavioral concerns could become fixated on a misdiagnoses of ODD more easily than if they were told of specific behaviors indicative of autism, like hand flapping or lack of eye contact.
Unfortunately, the American medical system is driven by profit, which puts those with lower incomes at a distinct disadvantage. If you have to choose between shelter and food or doctors visits and medication, basic necessities generally win out. Time demands come into play, as well. Taking time off work to attend a doctor’s appointment is not always possible, especially in certain work environments. I include this here only because there’s an over representation of people of color in the low-income bracket for assorted reasons.
Since the money isn’t there, low cost medical attention is often substandard, due to factors like overwork and lack of available resources. Patients often wait until the situation is at an emergency level before seeking the help they need.
The lack of understanding behind the causes of autism and ADHD also plays a role. If there is a connection between environmental factors, like heavy metal levels or nutritional deficiencies, finding balance in those arenas could go a long way to easing problematic symptoms. Of course, that could also lead to problems in food deserts or for people who can only afford low cost junk food.
This difficulty in attaining correct diagnosis, affording care and harmful social attitudes all make effective treatment even more difficult to get for many racial groups.
Steps can be taken towards remedying many of these issues through greater representation of diversity in all areas from awareness campaigns to clinical testing. It’s only through a deeper understanding of social barriers, environmental factors and genetic dispositions that more equality in medical treatment can become a reality.