A/HRC/15/26
associated technologies as applied to human beings and stresses the importance of freedom
of scientific research and the benefits derived from scientific and technological
development. The consent requirements, articulated in article 6 govern any preventative,
diagnostic, therapeutic intervention and scientific research, unless there is a legal basis,
according to ethical and legal standards adopted by States and compatible with international
human rights law. Consent, in general, ought to be prior, free, express and informed. The
information on which to base the consent should be adequate and provided in
comprehensible form, including possibilities for a withdrawal.
58.
The domestic practice of forensic science is tailored according to the needs for
evidence presentation in court. The protection of the public from criminal activities, which
is a primary obligation of government, is balanced by the protection of fundamental ethical
values and the respect for civil liberties in society, provided for by a national constitution or
relevant legislation. In that light, values such as liberty, autonomy, privacy, informed
consent and equality, while deserving of protection, are however not absolute and can be
curtailed in the general interest of the public or to protect the rights of others.11
59.
In a practical sense, every person has an interest in privacy into which neither the
State nor other persons should intrude without permission. Human dignity requires that a
person has the right to control access to his or her own body and that any intervention is
justified by both free, express and informed consent, or by law in consonance with human
rights principles. It follows thus that any collection, use and circulation of personal
information (such as biological samples and DNA profile), that is reasonably regarded as
intimate or sensitive, needs to be controlled.
60.
A particularly important issue with regard to forensic genetic identification has to do
with the use of surviving family reference DNA profiles to identify victims. In such cases,
the identification process is based on expected patterns of genetic relatedness among stated
relatives. If the actual biological relationships among individuals in an identification case
are not as they are represented or believed, there is a distinct possibility that this will be
discovered in the course of the identification work. In such cases, the issues of consent and
protection can be seen to extend beyond single individuals to impact their relatives as well.12
The potential for harm suggests that this information should not be divulged to families.
However, this must be balanced against the detriment that failure to investigate apparent
discrepancies can have on the ability to provide identification (for example, apparent
discrepancies may be due to simple misrecording or miscommunication of relationships).
Further, not divulging apparent discrepancies may require restricting the access of
individuals to their own data, and to information on the true status of their case. Failure to
identify for unexplained reasons may itself alert the family that a discrepancy has been
discovered, particularly if informed consent has properly informed the families of the risk,
and the steps that will be taken not to divulge.
61.
In many (however not all) instances, the risks associated with genetic data
processing for forensic purposes can be minimized through appropriately tailored data
collection and retention policies. Most notably, the risks related to family relationship
discrepancies pose a peculiar challenge in this situation and therefore should be addressed
11
12
See also Nuffield Council on Bioethics, The Forensic Use of Bio-information: Ethical Issues
(London, Nuffield Council on Bioethics, 2007), paras. 3.33, 3.34.
This is not conceptually unique to forensic identification, as in medical genetic diagnostic work
hereditary conditions are often studied, with the results of a test possibly impacting individuals who
themselves were not tested, and did not provide consent. Also, familial searching of criminal
databases raises the prospect of genetic surveillance of individuals whose profiles have not been
entered into the database under existing law, but those of their relatives have.
15
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