« June 2005 |
| August 2005 »
July 25, 2005
Genetics in the Literature
This week's scholarly articles on genetics and human research includes a new journal and several on steroid use.
Genetics, a new open-access, peer-reviewed interdisciplinary journal
published monthly by the Public Library of Science, has debuted. The
inaugural issue includes an interview
with Neil Risch.
survey of the SWISS researchers on the impact of sibling privacy protections
on pedigree recruitment.
Worrall BB, Chen DT, Brown RD, Brott TG, Meschia JF,
Neuroepidemiology. 2005; 25(1): 32-41
To understand the perceptions and attitudes about privacy safeguards
in research and investigate the impact of letter-based proband-initiated
contact on recruitment, we surveyed researchers in the Siblings With
Ischemic Stroke Study (SWISS). Although 66% of researchers valued
proband-initiated contact, only 23% said that probands viewed this
strategy as important to protecting the privacy of siblings. A substantial
minority of researchers (37%) said the strategy impeded enrollment,
and 44% said it was overly burdensome to probands.
access to high cost, genetically targeted drugs.
Hall WD, Ward R, Liauw WS, Lu CY, Brien JA
Med J Aust. 2005 Jun 20; 182(12): 607-8
Assessment of real cost effectiveness, with data linked to individual
health outcomes while protecting patient privacy, is an essential
challenge we need to meet.
success or failure to deliver drug targets?
Curr Opin Chem Biol. 2005 Jun 27;
Betz UA, Farquhar R, Ziegelbauer K
Although the combined effort of publicly funded projects and private
investments resulted in rapid identification of essentially all genes
of the human genome, harnessing this information to enable drug discovery
has turned out to be more challenging and time consuming than initially
perfect information-seeking research problem.
J Health Commun. 2005 Jun; 10(4): 323-9
Johnson JD, Case DO, Andrews JE, Allard SL
The technical possibilities for acquiring genomic information are
increasing at an exponential pace, as are the scientific advances
relating to it. The combination of individual salience, low health
literacy, the consumer movement, and important policy problems, then
makes genomics the perfect information seeking research problem.
genetic bill of rights: advancing a rights platform in biotechnology.
Krimksy S, Shorett P
Genewatch. 2005 Jan-Feb ; 18(1): 12-4, 18
technologies and human identity
J Med Philos. 2005 Jun ; 30(3): 261-83
I investigate two identity-related challenges to biotechnological
enhancements: (1) the charge of inauthenticity and (2) the charge
of violating inviolable core characteristics. My thesis is that a
lucid, plausible understanding of human identity largely neutralizes
these charges, liberating our thinking from some seductive yet unsound
objections to enhancement via biotechnology.
side of the human genome.
Am J Health Syst Pharm. 2005 May 15; 62(10): 1080-6
What about the other side of genetic discovery—the implications
for how we view ourselves and each other, not as patients or research
subjects, but as fellow citizens? What revelations and repercussions
will we have to contend with as clinicians, scientists, and professionals
engaged in public dialogue?
effects of anabolic steroids in athletes: A constant threat.
Maravelias C, Dona A, Stefanidou M, Spiliopoulou C
Toxicol Lett. 2005 Jul 5;
More specifically, this article reviews the reproductive, hepatic,
cardiovascular, hematological, cerebrovascular, musculoskeletal, endocrine,
renal, immunologic and psychologic effects of AAS steroid use. Drug-prevention
counseling to athletes is highlighted and the use of anabolic steroids
is must be avoided, emphasizing that sports goals may be met within
the framework of honest competition, free of doping substances.
typing: an accessory evidence in doping control.
Sípoli Marques MA, Pinto Damasceno LM, Gualberto Pereira HM,
Caldeira CM, Pereira Dias BF, de Giacomo Vargens D, Amoedo ND, Volkweis
RO, Volkweis Viana RO, Rumjanek FD, Aquino Neto FR
J Forensic Sci. 2005 May ; 50(3): 587-92
AIDS Treat News. 2005 Mar 25; : 6-8
DHEA came close to being totally banned in the U.S. in January 2005,
when a new law aimed at steroids in sports took effect. Even doctors
would not have been able to prescribe DHEA, and medical research on
its uses would have become far more difficult. A potentially important
treatment could have been lost for a long time -- and could still
be lost unless people are vigilant.
the Nazi Analogy
Science, Vol 309, Issue 5734, 535 , 22 July 2005
What is important to keep in mind about these underlying themes that
provided the underpinning for Nazi euthanasia and eugenic practices
is that they have little to do with contemporary ethical debates about
science, medicine, or technology.
rsp10 03:54 PM
Genetics in the News
National Institute of Genomic Medicine Announce Collaboration on Genetics
The collaboration represents the largest genotyping study undertaken
in Latin America. They also plan to immediately begin a pilot project
to determine patterns of sequence variation for genes of pharmacogenetic
interest in the Mexican population.
Industry Proposes Limits on Advertising
The pharmaceutical industry released draft guidelines that endorse
a period of informing doctors about new drugs before running ads for
for autism in sight
Scientists who have discovered a gene linked to autism believe they
can use the new knowledge to work out an individual's risk of the
Test Could Provide Early Warning Of Disease Risk
An Internet-based company claims that knowing about your genes could
help you stay healthy, and its researchers have developed a way to
test your genetic makeup from the privacy of your own home. DNADirect.com
provides a personal genetic testing kit to clients, then tests their
results before offering a risk profile.
advances require social advances
Boston Globe op-ed on the social concerns brought up by biotechnology,
especially questions of access and privacy.
medicine: A new approach to staying well
Another Boston Globe op-ed, by Francis Collins, on pharmacogenomics
and personalized medicine.
American Spectator column on the decreasing number of some congenital
birth defects as a result of prenatal genetic testing.
rsp10 03:34 PM
This Week in CGREAL
-Mark Aulisio & Jessica Berg will be attending a July 26-27 workshop
to develop guidelines for researchers on reporting results of genetic
research to subjects. The workshop is hosted by our Stanford counterpart,
CIRGE, the Center for Integration
of Research on Genetics and Ethics. For more, a bibliography
on this topic (use "CGREALDisclosure" and "duty2recontact"
as username & password) is available.
-Upcoming Meetings: The Tissue Research group is meeting on August 10 at 9:30 in the CCF bioethics library (in the JJ60South building).
The second annual planning retreat at the Manor House is at the Manor
House on Friday, September 16, from 9 am-3 pm.
rsp10 03:30 PM
July 19, 2005
Genetics in the Literature
The American Journal
of Bioethics has published an issue on human enhancement. Far
too many relevant articles to name individually, several of which
focus on ADHD in boys as a case study, so check out the table of contents
A new online Journal of Genetic Genealogy
has been started: http://www.jogg.info/ The first issue includes a
review article on the origins of modern Jewish populations.
Nat Rev Genet. 2005 Jun; 6(6): 502-6
O'Malley MA, Bostanci A, Calvert J
Gene patenting is now a familiar commercial practice, but there is little
awareness that several patents claim ownership of the complete genome
sequence of a prokaryote or virus. When these patents are analysed and
compared to those for other biological entities, it becomes clear that
genome patents seek to exploit the genome as an information base and
are part of a broader shift towards intangible intellectual property
One's Own Image: Ethics and the Reproduction of Deafness.
J Deaf Stud Deaf Educ. 2005 Jul 6
The ethics of the use of genetic screening and reproductive technologies
to select against and for deafness is presented. I argue that the premise
that deafness is not a disability of some sort is false and thus the
claim that genetic selection against deafness is unethical and untenable.
and genetic privacy: the value of bodily integrity.
Med Health Care Philos. 2005; 8(1): 97-103
An argument is developed that genetic privacy is fundamental to the
democratic participation of all citizens. By referring to the preconditions
of democratic citizenship, genetic privacy can be justified in a way
that respects the plurality of comprehensive doctrines of morality and
religion in contemporary societies.
Nat Genet. 2005 Jun; 37(6): 559-60
The identification and investigation of sentinel cases has illuminated
genetic discrimination in the US. Its occurrence impedes applications
of biotechnology and is a primary focus of public policy activity
at the federal level. Continued research and informed responses may
make genetic nondiscrimination more likely.
gene mining and the pharmaceutical industry.
Toxicol Appl Pharmacol. 2005 Jun 23;
Ethical issues related to data protection of the individuals providing
samples to bio-banks are several: nature and extent of information prior
to consent, coverage of the consent given by the study person, labeling
and storage of the sample and data (coded or anonymized). Discussions
on how to handle sampling and data are ongoing within the industry and
the regulatory sphere.
approaches to genetic screening.
Med Health Care Philos. 2005; 8(1): 69-77
Mallia P, ten Have H
Pragmatic approaches to genetic testing are discussed and appraised.
and standards in pharmacogenetic research.
Nat Genet. 2005 Jul; 37(7): 671-81
Need AC, Motulsky AG, Goldstein DB
In most instances, drug responses will probably prove to be complex,
influenced by both the environment and multiple genetic factors. For
pharmacogenetics to deliver on its potential, this complexity will
need to be recognized and accommodated, both in basic research and
in clinical application of pharmacogenetics. As the attention of researchers
begins to shift toward more systematic pharmacogenetic investigations,
we suggest some priorities and standards for pharmacogenetic research.
should we want to know about our future? A Kantian view on predictive
Med Health Care Philos. 2005;8(1):29-37. Heinrichs B.
What should we want to know about our future? In the following I
shall discuss this question against the background of Kant's Doctrine
of Virtue. It will be demonstrated that the system of duties of virtue
that Kant elaborates in the second part of his Metaphysics of Morals
offers a theoretical framework for addressing the question of a proper
scope of future knowledge as provided by genetic tests.
and clinical importance of haplotypes.
Annu Rev Med. 2005; 56: 303-20
Crawford DC, Nickerson DA
Here we review basic concepts of high-density genetic maps of SNPs
and haplotypes and how they are typically generated and used in human
genetic research. We also provide useful examples and tools available
for researchers interested in incorporating haplotypes into their
studies. Finally, we discuss the latest concepts for the analysis
of haplotypes related to human disease, including haplotype blocks,
the International HapMap Project, and the future directions of these
J Law Med. 2005 May;12(4):426-40.
rights: the body and information privacy.
This article examines the existing coverage of privacy legislation,
arguments in favour of baseline protection for bodily samples as sources
of information and possible approaches to new regulation protecting
individual privacy rights in bodily samples.
patents: the need for bioethics scrutiny and legal change.
Yale J Health Policy Law Ethics. 2005; 5(1): 403-12
Andrews LB, Paradise J
preimplantation genetic diagnosis: the pathologization problem.
Harv Law Rev. 2005 Jun; 118(8): 2770-91
lay people respond to messages about genetics, health, and race.
Clin Genet. 2005 Aug;68(2):97-105.
Condit C, Bates B.
This mini-review examines research in three areas: studies that address
the effects of these messages about genetics on levels of genetic
determinism and genetic discrimination; studies that address the effects
of these messages on attitudes about race; and, studies of the impacts
of race-specific genetic messages on recipients. We suggest that the
current literature appears fragmented because of methodological and
measurement issues and offers strategies for future research. A path
model helps organize future research examining the effects of messages
about genetics on socioculturally based racism, genetically based
racism, and unaccounted for racism.
Rights, Prenatal Diagnosis and Eugenics: A Cross-Cultural View.
J Genet Couns. 2005 Jun; 14(3): 183-187
This paper considers the disability rights critique of genetic testing
in the context of different communities and the issue of nondirectiveness.
Despite the wide usage of genetic diagnosis in Israel, no public debate
has emerged there concerning disability rights and prenatal testing.
The common attitude that emerged from interviews with Israeli representatives
of organizations "of'' and "for'' people with genetic diseases
and congenital disabilities can be described as a two-fold view of
disability: support of genetic testing during pregnancy, and support
of the disabled person after birth. This two-fold view is explained
as a secular construction situated in legal, economic and cultural
rsp10 03:37 PM
Genetics in the News
DNA Reveal Your Roots?
An article in the TIME Magazine about the growing numbers of people turning to DNA tests to find out about their ethnic heritage points
out that many of these testing companies are relying on insufficient
data, and thus are probably providing faulty results. This is especially
true for some companies that claim to be able to trace your ancestry
back to a specific ethnic group in Africa
women to pay more for BRCA tests
The ruling means that doctors offering tests for BRCA2 mutations
are now legally obliged to ask women if they are Ashkenazi Jews. If
they say they are, doctors must pay a licence fee to Myriad. No fee
is due if a patient says she does not know.
test shows sex of fetus at five weeks
A finger prick test for pregnant women that can tell them the sex
of their child has aroused huge public interest.
science and human rights come together
UNESCO has issued a draft declaration it says will be the first ever
to commit governments to take a position on the ethical and human
rights dilemmas raised by modern research.
Awful Truth About Drugs in Sports
Cheaters can't be stopped. Testing costs a fortune. It's shockingly
easy to beat the system. The drug cops are perpetually playing catch-up.
So says Don Catlin, the doping detective who helped break the BALCO
scandal wide open—and the man who's about to launch a radical
new campaign to finally solve the problem.
Ethnoancestry is now
offering sub-haplogroup determination tests; DNA
Heritage is now offering SNP (haplogroup) testing services.
center to launch new genetic-testing initiative
The Pew Charitable Trusts announced today that it is making a significant
new investment in the Genetics and Public Policy Center to improve
the overall effectiveness, safety, and reliability of genetic testing,
and to develop and promote recommendations where appropriate.
could grow beyond human control
A UN report argues that "the possibility of technology growing
beyond human control must now be taken seriously."
Govt, Oracle To Develop Medical, Genetic Database
Oracle Corp. said it has launched a pharmacogenomics project with
the Thai government to collect and unify medical, health and genetic
records in a nationwide electronic database.
From Genome to Pill
Science, Vol 308, Issue 5730, 1858-1860 , 24 June 2005
A new medicine for African Americans with heart failure hints at what
the drug industry sees as the enormous payoff from pharmacogenomics
predict brave new world of brain pills
A new report by leading scientists in the fields of psychology and
neuroscience argues that, very soon, there really will be a pill for
every ill. "It is possible that [advances] could usher in a new
era of drug use without addiction," said the report
by Foresight, the UK government's science-based thinktank.
That Responds Better to Blacks Raises Ethics Concerns; Don't Ignore
Genetics, Says BiDil's Maker
The development has raised ethics concerns about gearing medicines
to a certain race, but could help usher in so-called "personalized"
medical treatments tailored to an individual's genetics.
Among Science's top unanswered questions: What
Genetic Changes Made Us Uniquely Human? Why
Do Humans Have So Few Genes? Are
Humans Still Evolving? How
Much Can Human Life Span Be Extended?
rsp10 03:33 PM
Human Enhancement Technologies: Through the Looking Glass of Drama
On July 14-17, CGREAL joined with Hiram College’s Center for Literature and Medicine, the Bioethics Network of Ohio, and Cleveland State University to co-sponsor a Summer Symposium for high school and college teachers, writers and dramatists, entitled “Human Enhancement Technologies: Through the Looking Glass of Drama.”
The symposium combined scholarly presentations by philosophers, sociologists and legal scholars with the performance and discussion of five short plays that illustrate the ethical and social issues raised by the application of biomedical technologies to improve on human form and function beyond the treatment of disease.
The goal of the symposium was to stimulate the approximately 50 participants to develop creative ways to teach and present the issues to wider public audiences, to enhance democratic deliberation in this area.
The schedule can be found online.
rsp10 02:57 PM
Human enhancement on NPR
Jennifer Fishman and Eric Juengst, along with Julian Savulescu, appeared on WCPN/NPR (90.3 FM) last Thursday morning to discuss human enhancement.
Paola Ortiz, in a review of the show, points out five major themes that emerged in the discussion: physiological differentiation (won’t enhancement prove to be another mode for extending the divide that already exists between the well-off and the poor?), closing options vs. opening options (will enhancing really end up proving to be an irreversible limiting of the self/), “easy fix” criticism (is dealing with and accepting one’s limitations and problems an intrinsic part of human development?), differentiation vs. normalization (will individual’s empowerment over their own make-up manifest itself as homogenization of humankind?), and defense for autonomy vs. defense for enhancement.
rsp10 01:59 PM
July 05, 2005
Genetics in the Literature
'At the point at which you can do something about it, then it becomes more relevant': Informed consent in the pharmacogenetic clinic.
Soc Sci Med. 2005 Sep ; 61(6): 1201-10
This paper draws on ideas from the Sociology of Science and Technology, to explore informed consent issues surrounding the use of the drug Herceptin, widely cited as an example of a novel approach to drug development called pharmacogenetics. Drawing on qualitative semi-structured interviews with 25 UK-based breast cancer specialists, this paper explores Herceptin's disputed epistemological status, as an example of pharmacogenetics or as something out of the ordinary in terms of clinical practice. It considers how, in turn, this impacts on the way in which informed consent is sought and influenced by clinicians' desire to protect patients from possibly distressing test results. It highlights the flexible, contingent and context dependent nature of informed consent in the clinical setting.
Public health and the challenge of genomics.
Aust N Z J Public Health. 2005 Apr ; 29(2): 163-5
There is controversy in Australia and internationally over the eugenic implications of genomics, with desirable outcomes for public health set against 'slippery slope' arguments. Controversy cannot be avoided; we risk divisiveness if it is not carefully managed with informed, social-consensus-building debate. Furthermore, the intrinsic tension between genomics (with its individual and family choices) and public health (operating for the public good) may even necessitate a reconceptualisation of public health.
Building on relationships of trust in biobank research.
J Med Ethics. 2005 Jul ; 31(7): 415-418
The submission of an informed consent is an act of trust by a patient or a research subject, but a strict application of the rule of informed consent may not be sensitive to the multiplicity of patient interests at stake, and could thus be detrimental to trust. According to a recently proposed law on "genetic integrity" in Sweden, third parties will be prohibited from requesting or seeking genetic information about an individual. Cumbersome restrictions on research may be lifted, thus creating a more favourable climate for medical research.
Potential harms, anonymization, and the right to withdraw consent to biobank research.
Eriksson S, Helgesson G
Eur J Hum Genet. 2005 Jun 29;
There is less risk involved in biobank research than in human subject research; it should therefore be treated differently. Apart from not being particularly appropriate for protecting the interests of individuals, anonymization of samples has a negative impact on research. We suggest that the current view on withdrawal from research, supported by the Declaration of Helsinki and subsequent ethical guidelines, be abandoned in the context of biobank research and be replaced by an approach inspired by the Nuremberg Code. This approach requires those wishing to withdraw their samples from research to present sufficient reason for doing so.
rsp10 01:37 PM