Page 59 - Ethical Guidelines for Conducting Research Studies Involving Human Subjects

institutional and national levels that should be responsible for
formulating regulations, overseeing their implementations and
recommending measures to be taken in case of failure to follow the
regulations.

b. How mishandling of genetic information may pose physical and
psychological risks to individuals and families and expose them to
discrimination, stigmatization and other hazards in relation to their
social and professional lives as well as to education-, employment-
and insurance-related matters.

c. From whom and how consent for particular types of genetic
research should be taken, and what information should be provided
to the expected participants of the research on the use and
dissemination of the research results, and how anonymity can be
ensured about the genetic information gathered through the
research.

d. How the questions of privacy and confidentiality should be
addressed in relation to genetic research so that familial and
societal harmony are not disturbed, and misunderstanding,
separation and other psychological damages to individuals, families
or society can be prevented.

e. How genetic counseling should be provided before or after, as
applicable, to individuals undergoing genetic screening, testing or
manipulation, and what treatment measures those individuals are
entitled to in course of the research.

f. What sort of private, public or commercial utilization of genetic
information and related patenting should be considered unethical or
illegal (if a relevant act exists) and what procedural measures can
prevent such activities.

g. How the intellectual property rights can be exercised regarding
genetic research on Bangladeshi people, especially on the
vulnerable populations.

h. What specific points of restriction and allowance should be
considered in relation to genetic diagnostic procedures with human
embryonic material and to corresponding research.

i. In genetic research, what sort and how much of information should
be provided to the expecting parents regarding the prenatal
diagnosis of sex or disorders of the embryo/fetus in preparing them
for the possible consequences, and who should take the decision
about the continuation of pregnancy.

j. What should be the sources/locations/procedures of collection,

BMRC ETHICAL GUIDELINE ON HUMAN SUBJECTS Page 55