Page 70 - Ethical Guidelines for Conducting Research Studies Involving Human Subjects

Even if abortion (or rejection of pre-embryos) is not used to avoid
disease, many ethical questions remain about the use of genetic
technologies to modify the genes of a fetus or pre-embryo. Genetic
manipulation introduces larger questions about the potential effects
of genetic technologies on human relationships, questions that also
exist with abortion or rejection of pre-embryos.

There is inherent difficulty in providing ethical guidelines for use of
a technology which is still in its rudimentary stages or yet to come.
There is little direct empirical evidence to predict how genetic
technology will be used; complicating attempts to formulate ethical
guidelines for its use. Ethical guidelines should include these
aspects. (ICMR, 2006, India)

Guidelines for Prenatal Diagnosis

1. Equitable distribution of genetics services, including
prenatal diagnosis, is owed first to those with the greatest
medical need, regardless of ability to pay, or any other
considerations (justice).
2. Prenatal diagnosis should be voluntary in nature. The
prospective parents should decide whether a genetic
disorder warrants prenatal diagnosis or termination of a
pregnancy with an affected fetus (autonomy).
3. If prenatal diagnosis is medically indicated, it should be
available regardless of a couple's stated views on abortion.
Prenatal diagnosis may, in some cases, be used to prepare
for the birth of a child with a disorder (autonomy). Prenatal
diagnosis for adult-onset disorders may require special
counseling, so as to avoid testing of children who may be
carried to term.
4. Prenatal diagnosis is done only to give parents and
physicians information about the health of the fetus. The
use of prenatal diagnosis for gender selection, apart from a
situation with risk for sex- linked disorders, is not
acceptable (non-maleficence). Prenatal diagnosis for
paternity testing, except in cases of rape or incest, is
generally unacceptable, but should be considered on a case-
by- case basis.
5. Prenatal diagnosis solely for relief of maternal anxiety, in
the absence of medical indications, should have lower
priority in allocation of resources than prenatal diagnosis
with medical indications (justice).
6. Counseling should precede prenatal diagnosis (non-
maleficence).

BMRC ETHICAL GUIDELINE ON HUMAN SUBJECTS Page 66