In House, M.D., a
popular television medical drama, a question that appears is whether or Dr.
Remy Hadley has Huntington’s Disease, a fatal genetic disease for which there
is no cure. The drama presents her many
dilemmas: Should she get receive genetic screening for the disease? How will the outcomes of her results affect
her life? How will others, notably her
boss, Dr. House, treat her depending on her disease state? In many ways, although her situation is
dramatized and glorified, it represents the problems many individuals face.
The Meanings of “Race” in New Genomics:
Implications for Health Disparities Research addresses the issues of
genetic disease screenings that have a so-called “racial” basis. It puts forth the idea that there is no
biological basis for race, rather, race is a merely a socially constructed
object based on observable physical features.
However, an important caveat is that certain racialized groups do
experience significant genetic differences when it comes to disease. The question thus becomes how we can address
these contradictions.
The
suggestion I found most inviting was on page 66, where the authors suggest that
we “dispense with a priori racial
classification,” in other words, we do not use race, or any variant of race, in
screening procedures. This eliminates a
biased or prejudicial basis, but it also presents a highly inefficient
solution. If Huntington’s or BRCA-1
mutation arises very rarely outside an already identified population, what is
the use of testing these low-risk individuals?
I agree that our current language, such as associating BRCA-1 mutations
with the racially identified Ashkenazi Jews, is flawed, but it seems
implausible that there is not a better solution.
I was
thinking about this problem and realized a few things. First, that any modification or manipulation
of existing language is problematic because of the various connotations they
hold. Second, it is often useful,
especially if we are to head towards individually tailored drugs, to offer some
sort of categorization that is apparent for all individuals within the
specified group. The later point is
heavily based in genetics, but the trouble is currently not with understanding
the differences in genetics, but the language used to describe it.
Perhaps a solution is to create a
new nomenclature of regional or ancestral groups using heavily medicalized
terminology. If the BRCA-1 mutation is
traced to the currently identified “Ashkenazi Jews,” why not eliminate this
potentially stigmatized label and replace it with an obscure label like group
GH2583 (random letters/numbers). Instead
of associating sickle cell with Blacks as a racial group, why not trace the
genetic origins of the individuals sickle cell gene (as there are multiple
mutations of it) to a some arbitrary population which has yet another arbitrary
designation? This solution addresses
both issues. It eliminates the use of
common language and replaces it with a professional and scientific label that
is cannot be easily used and stigmatized by the average laymen. Second, it eliminates the messy classification
system that exists today which is rarely correct and allows for a very specific
regional or ancestral population designation that can differ for any
gene/disease of interest. After all, “Asians”
cannot sufficiently describe the different countries it represents, and even “Chinese”
or “Japanese” cannot describe the vast geographical variance within these
countries.
No comments:
Post a Comment