Page 60 - Ethical Guidelines for Conducting Research Studies Involving Human Subjects

storage, handover, use or disposal of genetic, embryos and genetic
materials for research purposes.

k. What precautionary regulations should be in place for different
procedures of gene manipulation, like in gene therapy, in order to
restrict them to precautionary diagnostic and remedial measures
for disorders rather than using them as trait-enhancing (eugenic)
measures.

l. What guidelines should determine how a balanced approach may be
taken in utilizing and expanding the huge potential of genetic
research on one hand and not crossing the ethically sensitive limit
of achievement on the other while using stem cell manipulation and
other advanced technologies.

13.2 General Ethical Guideline

a. Existing genetics services in a nation should be available equally to
everyone regardless of ability to pay and should be provided first to
those whose need is greatest.

b. Genetic counseling should be non-directive.

c. All genetics services, including screening, counseling, and testing,
should be voluntary, with the exception of screening newborns for
conditions for which early and available treatment would benefit
the newborn.

d. All clinically relevant information that may affect the health of an
individual or fetus should be disclosed.

e. Confidentiality of genetic information should be maintained. When
there is a high risk of serious harm to family members at genetic
risk, the information should be used to avert this harm. If the
individual refuses to tell her/his family, the professional may
consider overriding confidentiality.
f. Individual privacy should be protected from institutional third
parties, such as employers, insurers, schools, commercial entities,
and government agencies.

g. Prenatal diagnosis should be performed only for reasons relevant to
the health of the fetus and only to detect genetic conditions or
fetal malformations.

h. Choices relevant to genetics services, including choices about
counseling, screening, testing, contraception, assisted procreation
where culturally accepted and abortion following prenatal
diagnosis, where legal, should be available on a voluntary basis and
should be respected.

BMRC ETHICAL GUIDELINE ON HUMAN SUBJECTS Page 56