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the populations in which they are to be used and the delivery of pharmacogenetic
testing should be made as straightforward as possible. Needs of healthcare profes-
sionals as well as patients for access to reliable information about tests and medi-
cines from independent sources were emphasized. Family physicians will need
guidance in answering new types of question, such as whether patients should be
entitled to a prescription for a drug even if they do not wish to take an associated test.
In case the safe and effective use of a medicine can only be determined by phar-
macogenetics, bypassing of the test would subject the patient to risk and should not
be permitted. There is too much fuss being made about the ethical aspects of genetic
information. It is no different from other laboratory parameters of a patient with
interindividual differences.
Ethical Aspects of Genetic Information
Ethical Issues of Whole Genome Analysis
The ability to sequence an individual’s entire genome will enable production of an
unprecedented amount of detailed genetic information, helping researchers to
explore the relationship of genes and environment in the development of a wide
variety of human diseases. Researchers would be seeking to produce a record of all
the genetic information of subjects. As a result, all known genetic predispositions
will be available and, depending on the data sharing policy, accessible to a wide
range of researchers and, possibly, the public at large. This will raise ethical issues
about access to and use of genetic information. In order to live up to its potential,
whole-genome research in the future should be built upon some ethical foundation
that will give people the confi dence and trust they will need in order to become vol-
unteers. A group of experts has published a statement of consensus that is intended
to serve as practical guidance for scientists involved in whole-genome association
research and for ethics boards (Caulfi eld et al. 2008 ). Although there is an immedi-
ate need for ethics guidance, the research communities also should continue to
explore the ethical, legal, and social implications of this rapidly evolving fi eld.
The ethical framework needed to encourage individuals to join whole-genome
association studies, should support good policies for consensual use of personal
information, allow individuals freedom to withdraw from research, provide guid-
ance for what type of information should be offered to participants, and should help
guide and control the public release and storage of whole-genome association data.
The statement proposes eight recommendations aimed at creating more secure and
consensual practices for research institutions involved in whole-genome association
studies. Among their suggestions, the authors propose that before beginning partici-
pation in a whole-genome association study, participants should be asked to provide
consent for future use that includes as much detail as possible, including information
about the sampling and sequencing process, associated commercialization activities,
possible risks, and the nature of likely future research initiatives. This process should
21 Ethical Aspects of Personalized Medicine