Open Peer Commentaries
Lack of Access to Genetic-Relative
Family Health History: A Health
Disparity for Adoptees?
5 Inmaculada de Melo-Martı ´n , Weill Cornell Medicine–Cornell University
In their article May and colleagues (2016) call attention to a
feature shared by most adoptees: their lack of access to
genetic-relative family health history (GRFHx). They argue
10 that such lack of access represents an unjust health
disparity
1.
for adoptees and suggest that it could be rem-
edied by emerging genomic technologies. That genomic
technologies could be helpful to adoptees—or anyone else,
for that matter—seems uncontroversial, so I would put
15 this aside.
2.
That lack of access to GRFHx constitutes a
health disparity for adoptees is, however, a more conten-
tious position, one that May and colleagues fail to support
adequately. In the rest of this commentary, I defend this
claim. My purpose, nonetheless, is not to argue that such
20 disparity does not exist; rather, it is to point out that May
and colleagues have not offered compelling arguments or
evidence for it and that at least some evidence exists that
calls that conclusion into question.
The first reason why May and colleagues have failed to
25 defend their position adequately is that their claim, that is,
that lack of access to GRFHx constitutes a health disparity
for adoptees, is ambiguous and May and colleagues’ argu-
ments further contribute to the ambiguity. Such claim
could be understood in two, perhaps interrelated but
30 clearly distinct, ways: (A) that lack of access to GRFHx rep-
resents a health disparity for adoptees, and (B) that adopt-
ees are at a disadvantage regarding their health—in
comparison with non-adoptees—because they lack access
to information about their GRFHx. As should be clear,
35 both the evidence and arguments that one can offer in sup-
port of these two claims, as well as the potential solutions
to the disparities alleged in each of them, are different.
Moreover, one might find one of these claims persuasive
while, without inconsistency, finding the other one uncon-
40 vincing. Indeed, claim (A) seems quite implausible,
3.
while claim (B) appears reasonable in principle—though,
as I argue in the following, it is also questionable.
That May and colleagues are mixing these two distinct
claims is evidenced in their discussion about the essential
45 elements of health disparities. For instance, when discus-
sing the “underlying disadvantage” element, May and col-
leagues argue that “In the context of GRFHx for adoptees,
a disadvantage might be identified in two ways: by refer-
ence to adoptees lacking access to important, recognized
50 components of health care management available to most
non-adoptees; and as identified by the preferences, desires,
and needs expressed by adoptees themselves” (XX). Now,
that adoptees desire access to GRFHx might constitute evi-
dence for claim (A) just described, but it arguably provides
55 no evidence for claim (B). When addressing the systematic
nature of health disparities, May and colleagues maintain
that “The systematic nature of the GRFHx gap for adoptees
is a function of the nature of adoption itself” (XX). This
again could provide evidence for (A) but no evidence
60 whatsoever for (B). Similarly, when discussing the issue of
avoidability they contend that two strategies might be
used to address lack of GRFHx for adoptees. One would
be to ensure a move toward open adoptions, and another
one would be to use genetic testing. But arguably genetic
65 testing would fail to address (A), even if it could contribute
to solving (B).
Given May and colleagues’ emphasis on genetic testing
as a potential solution, then, I take it that what they are
Address correspondence to Inmaculada de Melo-Mart ın, Division of Medical Ethics, Weill Cornell Medicine–Cornell University, 402 E.
67th St., New York, NY 10065, USA. E-mail: imd2001@med.cornell.edu
1.
For simplicity I simply talk of “health disparity,” as May and colleagues are appropriately concerned with a normative conception of
disparity.
2.
It seems worth pointing out, however, that given May and colleagues’ contention that a health disparity is at stake in this case, their
conclusion is quite weak. If, indeed, adoptees suffer a health disparity that could be reduced by the use of genetic testing, one would
have expected a more forceful conclusion about someone—presumably the state—having a duty to provide such testing. I do not deal
with this issue here.
3.
Due to space limitations, I will not defend this claim.
ajob 1
The American Journal of Bioethics, 16(12): 1–3, 2016
Copyright © Taylor & Francis Group, LLC
ISSN: 1526-5161 print / 1536-0075 online
DOI: 10.1080/15265161.2016.1240257
Uncorrected Proof