Page 105 - Human Rights

Faculty of Nursing
Adult care Nursing Department

Genetic information

An issue of evolving concern to nurses, particularly in developed countries, is that of consent,

confidentiality and genetic information.

The importance of this subject is indicated by the adoption by the UNESCO General Conference
in 1997 of a Universal Declaration on the Human Genome and Human Rights.

This was endorsed the following year by the General Assembly of the United Nations.

The Declaration makes clear that “the free and informed consent of the person concerned shall
be obtained” before any research, treatment or diagnosis affecting an individual’s genetic identity

(genome) is undertaken.

It also specifies that “the right of each individual to decide whether or not to be informed of the

results of genetic examination and the resulting consequences should be respected”.

Nurses are likely to play important roles in the application of the tools of human genetics at
community level – including around issues such as the use of sex or other genetic traits as a basis

for the termination of pregnancy – and some have argued the need for a nursing declaration to

address genetics, human rights and public policy.

This may be increasingly important as nurses become responsible for genetic assessments and
counselling.

The challenge has, in part, been taken up by nurses working in genetics.

The International Society of Nurses in Genetics (ISONG) has adopted a number of position
statements on issues such as genetic counselling for vulnerable populations, privacy and

confidentiality of genetic information, and the role of the nurse.

3.3 Health policy development

101 Academic Year 2025/2026