Perceptions regarding genetic testing in populations at risk for nephropathy.

Area of Science:

• Genetics
• Nephrology
• Public Health

Background:

• Genetic predisposition to kidney diseases varies across ancestral populations.
• Returning genetic test results to research participants remains a complex ethical issue.
• This study investigated the perspectives of African-Americans (AAs) and European-Americans (EAs) at risk for end-stage kidney disease regarding genetic testing.

Purpose of the Study:

• To compare the attitudes of African-Americans and European-Americans towards the value and utility of genetic testing for kidney disease risk.
• To understand participant preferences for receiving genetic test results, irrespective of available interventions.
• To assess the likelihood of participants sharing genetic risk information with family members.

Main Methods:

• A survey on attitudes toward genetic testing was administered to 130 individuals (64 AA, 66 EA) with a family history of kidney disease requiring dialysis.
• Fisher's exact test was employed to analyze differences in attitudes between the two population groups.

Main Results:

• Both AAs and EAs expressed a strong desire to know their genetic test results, even if no treatments were available (90% AA, 82% EA).
• A high percentage of participants from both groups indicated they would inform family members about their genetic risk status, whether positive or negative (87-92% AA, 88-89% EA).
• Age differed significantly between groups (p=0.04), but familial relationships were similar (p=0.22).

Conclusions:

• Attitudes regarding the acquisition and utilization of genetic test results for kidney disease research are comparable between AAs and EAs.
• The majority of individuals at risk for end-stage kidney disease want to receive genetic information and share it with their families.
• Findings have significant implications for clinical practice, research study design, and the informed consent process in genetic research.