Older research participants are motivated to receive genetic results for the benefit of younger relatives

9 Dec 2025

Interviews with older research participants showed that they valued receiving secondary findings from a research study, describing benefits for themselves and for family members. 

Dr Amanda Willis, Garvan Institute of Medical Research

The use of genomic technologies in research has increased the number of research participants with medically actionable genetic research results — also known as secondary findings. Because of the potential health benefits for participants and their relatives, there is a growing ethical imperative for researchers to offer this information to participants. However, the age of research participants may impact whether and how genomic research results are returned. 

The clinical actionability of genetic information is less certain among older individuals, although there are substantial potential benefits for younger family members. Additional challenges when returning results to older participants include potential cognitive decline and other morbidity. This has led some to question the ethical imperative and practicality of offering secondary findings to older people, if primarily for the benefit of their younger family members.

Older people have historically been excluded from research. This means there is limited insight on their views and the impact of returning secondary findings in this age group. The views of older research participants are needed to guide how research practice progresses in this area. 

The ASPirin in Reducing Events in the Elderly (ASPREE) trial is a long-term, multi-centre study of aspirin and health in older adults. The ASPREE Genomics sub-study used samples from the ASPREE Healthy Ageing Biobank to explore how genes influence health and aging. Participants were given the option to learn secondary findings that could be important for their health, or the health of their family. Secondary findings were returned by My Research Results, a genetic counsellor led programme that facilitates return of results to research participants Australia-wide.   

Secondary findings were returned to 50 ASPREE participants, or their nominated next-of-kin, between 2021 and 2023. ASPREE participants were aged between 78 to 89 years. Secondary findings for hereditary cancer risk (n=42) or cardiac conditions (n=8) were provided. The majority of participants opted to proceed with confirmatory testing (n=34) or were already aware of the result (n=8). 

Sixteen ASPREE participants were interviewed about their experience. The average age of interview participants was 82 years (age range 78 to 89). The majority were female (n=9) and had children (n=15). Interview participants received results for hereditary breast/ovarian cancer (n=13), Lynch syndrome (n=2) or familial hypercholesterolemia (n=1). Key findings from the interview data are presented below. 

Older adults are resilient

Participants said their age and life experience made them more accepting of the genetic information. They were not worried about how the results might affect their own health since they had already lived through most of their life’s health risks. Some were already aware of the condition and were having appropriate management. 

One participant stated: “It makes you stronger, all the experiences of life.”

Family comes first

The main reason participants wanted their genetic results was to help their family members. They felt a strong sense of responsibility to share the information. Participants thought it was helpful that their children and grandchildren could get tested and take steps to manage their own health. As one participant described: 

“I only wanted to know for my family, to pass that information onto them. If they need it, it’s there.” 

The research relationship matters

Participants had a good experience and built trust with the ASPREE trial. This made them more open to receiving genetic information. They felt that getting these results was a valuable part of their participation in the trial, as one participant said: 

“Getting this information just shows how worthwhile it has been to be in the trial. I’d be none-the-wiser otherwise.”

Research participants in this qualitative study valued receiving unexpected secondary findings from the ASPREE trial, particularly because of the potential benefits for family members. These older individuals reported their age and life stage as beneficial in the context of receiving secondary findings. The provision of secondary findings also enhanced their research participation. 

The findings of this study challenge assumptions about the diminishing value of genetic information in this older age group. Given the potential benefits of providing genetic information, decisions to exclude older individuals based on their age must be carefully considered. We hope that sharing the positive experiences of ASPREE participants will encourage other researchers to consider including older adults in genetic research.