Medicine, Health Care and Philosophy 2: 47–49, 1999.
© 1999 Kluwer Academic Publishers. Printed in the Netherlands.
Review article
The human genome project: Perilous promises?
Abby Lippman
Department of Epidemiology & Biostatistics, McGill University, Montreal, Canada
Smith, E. & Sapp, W. (eds.): 1997, Plain Talk about
the Human Genome Project. Tuskegee: Tuskegee
University. 292 pages. ISBN: 1-891196-01-4.
Conferences to consider the ethical, legal and social
implications (“ELSI”) of developments in genetics,
and the published proceedings thereof, have become
so frequent, with all-too-often the same participants
and the same themes being recycled, that it is no
small task for any one volume to distinguish itself
from the crowd. This one does, even though the issues
covered in this compilation of the many (and quite
varied) presentations given at a conference on the
Human Genome Project (HGP) at Tuskegee (Alabama,
USA) University in 1996 mostly fit under the by-now
standard ELSI rubric. It stands out because the place
of this meeting gives these papers special significance.
And this meeting place also explains the out-of-the-
ordinary emphasis in these papers on how the HGP
is likely both to effect and be effected by the North
American legacy of racism.
For most biomedical conferences, the site is mainly
a matter of convenience and budget. Not so this one.
These proceedings are necessarily linked to the place,
and the name Tuskegee inflects the discussions of the
HGP in this book in at least two ways. Tuskegee is
a University founded by Booker T. Washington soon
after the end of the US Civil War to offer higher
education to African-Americans, and education as it
relates to minority groups and the HGP is a recur-
rent theme in this book. Tuskegee is also the place-
name for the infamous “Syphilis Study” carried out
for 40 years (1932–1972) during which poor black
males were purposely not treated with penicillin so
that researchers in the US Public Health Service
could study the “natural history” of this disease. The
cautionary warnings of this horrendous study about the
persisting nature of racism and the role of science in its
perpetuation are strongly echoed in these pages with
a repeated spotlight on the potentially volatile mix of
developments in genetics and systemic racism in the
US.
The book is divided into five sections and contains,
besides an Introduction and 3 Appendices, 31 entries
varying in length (about 4 to 16 pages) and quality.
These are a mixed lot, from papers with a straight-
forward pedagogical purpose of explaining the tech-
niques being used to map and sequence the human
genome, to those which generally sing the glories
of current research work, albeit with some (usually
limited) consideration of the possible “misuses” of
genetic information (as in insurance or employment
decisions), to those which are, to me, the most inter-
esting and important chapters: those that remind us of
the troubling nature of the fundamental assumptions
underlying this project, assumptions we ignore to our
detriment.
Because space precludes detailed remarks on all
chapters, I will instead merely highlight some of those
entries likely to be of most interest to the general
reader insofar as they propose fundamental critiques
of this costly international undertaking to decipher
(and make use of) the human genome. Most of these
chapters are gathered in the second and third sections,
aptly subtitled “Matters of Race and Diversity” and
“The Perils”, respectively, and, in general, constitute
some of the more thought-provoking entries. My selec-
tions and my comments about them no doubt reflect
my own longstanding critique of the HGP and of what
I have been calling “geneticization”.
Of all the applications of information to be
garnered through HGP research, predictive genetic
screening and testing generally get the most attention.
While those with commercial goals see these tech-
nologies as probably the most lucrative spin-offs of the
genome industry, scores, if not more, of North Amer-
ican and European bioethicists, legal scholars, social
scientists and others have noted the potential of these
activities to reinforce existing (and lead to new) forms
of discrimination against individuals and groups. Not
48 A BBY L IPPMAN
surprisingly, then, these technologies were a particular
focus for the Tuskegee participants, several of whom
directed their comments specifically to the “promises
and perils” of genetic testing with respect to “matters
of race”.
In this context, the chapter by Patricia King is
essential reading. Perhaps more than any other partic-
ipant, she recognizes the political nature of the concept
of “difference” and identifies what she calls the “crisis”
of the HGP: how the information it provides will be
played out in a racist society and how this problem will
always elude standard bioethical analyses. Implicit in
her paper is the point (made in more detail by Philip
Bereano in his chapter) that technology, including the
HGP, genetic testing and genetic screening, is not (in
fact, cannot be) neutral. Consequently, while regu-
lations of various kinds to limit potentially harmful
ethical, legal and social effects of their uses will surely
be necessary, she clearly recognizes that they are
far from sufficient for protecting individuals, partic-
ularly those especially vulnerable because of their
minority group membership, from the perils of the
genetic thinking that underlies them. To the extent
that guidelines and other controls guarantee adher-
ence to such principles as, for example, informed
consent, individual autonomy, and distributive justice
in their use, they may manage (limit) the negative
consequences already envisioned as possible, but they
will fail to address not only the so-far unpredicted
perils but also, and perhaps of more concern, the
complex forces encouraging this genetic approach to
serious health problems in the first place.
Also highly recommended is the chapter by Glenn
McGee. His focus is on what is called “enhancement”,
the genetic and other biomedical and biotechnolog-
ical ways in which we might seek to “improve”
individuals, and he throws new light on this much-
discussed topic by framing it within the context of
what he calls “responsible parenthood”. He argues
that responsible parenthood is incompatible with the
“medicalization” enhancement necessarily involves
and that high-tech genetic approaches to the social
problems that underlie most calls for enhancement are
inappropriate. More specifically, he outlines “three
deadly sins” of parenthood that would be committed
by any enhancement project (“calculativeness”, “short-
sightedness” and “hasty judgment”) thereby offering
the reader refreshing insights into the fundamental
meanings and goals of “improvement” and the poten-
tial hubris of trying to design our children. My only
complaint about his chapter is its too-short length: one
would have liked a more extensive discussion of the
many thoughtful ideas he only has space to touch on.
Richard Cooper’s entry is also recommended read-
ing. Using hypertension among African-Americans
as his focus, he makes it clear why we must turn
our attention upstream to the source(s) of the prob-
lems genetics is supposed to address rather than keep
looking downstream at the issues to be managed while
we continue to seek only genes whenever ill health, or
difference, is found. As do King, McGee and some
others (e.g. Courtney Campbell in a thoughtful essay
on genetic testing for breast cancer and on the “disem-
powering” effects of knowledge), he questions the very
premises of a genetic approach, not just the aspects
needing management. Thus, in his discussion of hyper-
tension, he clearly reveals not just the limits of genetics
and a genetic approach (with respect to preventing
or curing this ailment), but also the great harm that
might come from this geneticization of patterns of
disease distribution. As a concise lesson, too, in the
limits of epidemiology, this chapter stands out with
its emphasis on how the “problems” and “errors” of
epidemiology and genetic thinking cannot be “regu-
lated” or “legislated” away (as the liberal supporters
of the HGP would like us to think). Cooper reinforces
the thesis that in a racist society (or, I would add, one
that is sexist, classist, or otherwise fractured), genetic
(or epidemiological) studies which look for differ-
ences between socially-constructed groups (as these
are) cannot but reinforce stereotypes and prejudices,
and even impede understanding of health differences
between individuals.
In what could be seen as a companion piece to
Cooper, Fatimah Jackson summarizes what may be a
little-known document, the “African American Mani-
festo on Genomic Studies”, which should be required
reading by all those working on the HGP and related
projects. Whereas many of the six points of the Mani-
festo deal specifically with correcting the “misrepres-
entation” (i.e. absence) of African-American perspect-
ives and priorities in research to date, her underlying
insistence on the linkage of genetic studies to iden-
tified health priorities and their amelioration could
probably serve as a basis for any genetic research if
the latter is, in any way, to be “responsible”. She
appears to be suggesting, not unlike Cooper, that
we first identify the truly important (health) prob-
lems we need to address and only then decide what
preventive and corrective measures we will employ.
And, as commonsensical as this would appear, it is in
marked contrast to the reverse approach increasingly
applied today whereby the genetic technologies now
being privileged determine when, and for what, we
intervene.
Georgia Dunstan’s entry, which follows Jackson’s
chapter, might be read as giving some specificity to this
Manifesto. She writes of the issues “2nd generation”
human genome projects such as she is initiating must
address to avoid the myopia (exclusiveness) of their
 T HE HUMAN GENOME PROJECT: P ERILOUS PROMISES ?
predecessors. While I recognize how her work impor-
tantly seeks to broaden participation in the HGP, I wish
she had considered if it might not be too late for incor-
porating a consideration of such things as “population
history” and “differences in social structure” along
with DNA sequence variability in future studies of
health and disease: I fear we may already have become
so tightly locked into seeing genes as the basis for
all that distinguishes between us by “first generation”
work that we may be unable to see things other-
wise. We already have a kind of genome “legacy”, the
misuse/use (false) dichotomy and geneticization being
two obvious examples, and these reigning discourses
may be immovable barriers not only to her “2nd gener-
ation” approach, but also to the more essential critiques
of the genome projects to which some of the other
authors in the volume make allusion.
Readers of this book will be challenged to assess
for themselves the relative strengths of the “promises”
and “perils” of the HGP, as well as their interdepend-
ence. Not only is there no direct engagement between
the authors, but many contributors seem to be on
parallel tracks, out of sight of each other. The uniniti-
ated reader’s comprehension of the huge social project
the HGP comprises (and it is a social project perhaps
even more than a biomedical one in many ways) and
of its more worrisome core issues would have been
increased greatly by some synthesis (other than that
occasionally provided, as by Duster, who should be
read) and beyond the chapter summaries in the Intro-
duction (which are not always useful). Some format
in which authors directly challenged each other would
have been a valuable addition, too. The only entry
that attempts this, David Botstein’s chapter, is, I fear,
only an example of how it should NOT be done. He
basically laments the “ELSI tide” he claims invaded
the conference, suggesting that critics have been given
too much time/space to present their concerns and that
really, the HGP is all for our good! Let’s just get on
with it!
This is not a book that needs to be read
systematically from front to back. And there are
even parts which readers not interested in matters
“local” to the United States (e.g. the chapters centred
on the implications of genetic information with respect
to health insurance, as well as the final set of papers
on genetic education) may choose to skip over. For
those who already know something about the science
of molecular genetics and the technical aspects of the
HGP, and for whom the details of the organization
of the HGP in the USA are not of primary interest,
starting with the chapters by Campbell, Cooper, King
49
and McGee is suggested (and to these personal “favor-
ites” already singled out I would add the entries by
Phil Bereano and Troy Duster whose thoughtful and
reasoned critiques make sober reading, and obviously
irritated Botstein). These contrary commentaries on
the HGP may destabilize the presumptively positive
assumptions about its impact with which the media
bombard us and encourage the reader appropriately
to question the meaning of framing concerns within
a “use/misuse” dichotomy. The latter may provide a
practical framework for those who argue that if we
carefully control the potential perils of what we will
learn from the HGP, its promises can only be of benefit
to human health. But it ignores, as several critics at
Tuskegee underscored, why we seek to learn things
genetically in the first place. And the authors who
emphasize the inseparability of the promises and perils
of the HGP, who identify other ignored determinants of
health, who acknowledge the need for corrective, and
not only distributive justice in matters of health, are,
to me, the most valuable contributors to this collec-
tion. They clarify how certain world-views, certain
understandings of people and of power, are neces-
sarily built into the HGP and are beyond managerial
control, no matter how imaginative the latter may be.
They underscore the fundamental concerns aroused by
viewing the HGP and its “products” as a way, perhaps
even THE way, to deal with differences in health (and
behavior) that distinguish individuals and groups from
each other, a view that cannot but be worrisome and
problematic when promises and perils, far from being
self-evident, are mostly a matter of perspective.
At the end of this book, as at the end of so many
other collections based on conferences sponsored by
the US Institute for Human Genome Research, the
question remains as to whether, as Philip Bereano
puts it in his chapter, “ELSI is a cover for the HGP”.
I would expand this query to ask if we can actu-
ally have explorations of the HGP that question its
premises as well as its promises substantively and not
just symbolically? Or will critics who take on this chal-
lenge, as several authors in this volume do, continue
to be put down as ill-informed irritants? Each reader
will come to her/his own response(s) to this ques-
tion, but if nothing else, this book will keep the query
alive. It will also, I hope, encourage students at the
college/university level to whom it appears this book
is primarily directed to wonder if those who already
have power and privilege are likely to be the major
beneficiaries of what can be expected from the HGP,
while its promises are themselves likely to be perilous
for the rest of us.