Center for Genetic Research Ethics and Law

Will investments in large-scale prospective cohorts and biobanks limit our ability to discover weaker, less common genetic and environmental contributors to complex diseases?

Environ Health Perspect. 2005 Feb ; 113(2): 119-22 Foster MW, Sharp RR

Using communities as building blocks for larger cohorts and biobanks presents some practical and ethical challenges but also enhances opportunities for interdisciplinary, multilevel investigations of the multifactorial contributors to complex diseases.

Informed consent, participation in, and withdrawal from a population based cohort study involving genetic analysis.
Matsui et al.

J Med Ethics.2005; 31: 385-392.

We examined the results of a population based genetic cohort study to identify the factors affecting the participation rate by members of the general public and also specifically to examine the impact of different consent procedures on the rate of participation by prospective candidates and their subsequent withdrawal rate from the study. The general population responded sceptically towards genetic research. It is crucial that genetic researchers utilise an informative and educational consent process worthy of public trust.

In One's Own Image: Ethics and the Reproduction of Deafness.

J Deaf Stud Deaf Educ. 2005 Jul 6

Johnston T.

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.

 

Democracy and genetic privacy: the value of bodily integrity.

Med Health Care Philos. 2005; 8(1): 97-103
Beckman L

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.

Genetic nondiscrimination.

Nat Genet. 2005 Jun; 37(6): 559-60
Billings PR

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.

 

Global gene mining and the pharmaceutical industry.

Toxicol Appl Pharmacol. 2005 Jun 23;
Knudsen LE

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.

 

Pragmatic 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.

 

Priorities 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.

What should we want to know about our future? A Kantian view on predictive genetic testing.

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.

Definition 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 resources.

J Law Med. 2005 May;12(4):426-40.

Blood rights: the body and information privacy.

Alston B.

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.

Gene patents: the need for bioethics scrutiny and legal change.

Yale J Health Policy Law Ethics. 2005; 5(1): 403-12
Andrews LB, Paradise J

Regulating preimplantation genetic diagnosis: the pathologization problem.
Harv Law Rev. 2005 Jun; 118(8): 2770-91

How 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.

Disability Rights, Prenatal Diagnosis and Eugenics: A Cross-Cultural View.

J Genet Couns. 2005 Jun; 14(3): 183-187
Raz AE

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 contexts.