# Assessing Minor Children’s Readiness to Receive Genetic Information

> **NIH NIH K99** · MAYO CLINIC ROCHESTER · 2021 · $1

## Abstract

More and more people are receiving genetic and genomic sequencing with the assumption that this will
improve health outcomes and/or health behaviors (14). However, these tests are being utilized with an
incomplete understanding of the implications of genetic risk information on individuals and their family
members (50). Existing studies on this topic have largely focused on adults (4, 8-10). There is comparatively
little information about the implications of parental genetic information on minor children (35, 39, 40). This
gap matters because many parents now routinely receive genetic test results (22). Though parents may not
want to burden their children with distressing information, data indicate that it is crucial for parents to
adequately and/or accurately communicate about genetic risk information with their children, particularly
adolescent children (1, 12). While data suggests this information should be communicated to minor children,
very little data exists on when and how to communicate this to minor children, leaving parents and providers
in the dark. In order to sufficiently examine questions of when and how to communicate parental genetic
information to minor children, it is paramount to consider a child’s own unique developmental stage, cognitive
capacity, and ability to cope with such information. To properly address this subject, the fields of pediatric
bioethics, genetics, and child psychology must be applied. I am uniquely positioned to conduct this research,
since I have expertise in pediatric bioethics and genetics. However, I need rigorous training in child psychology
which I will obtain through: 2 years of course work at the Institute of Child Development at the University of
Minnesota, advisory boards consisting of 12 members who are internationally renowned thought leaders in the
field, directed readings, and national conferences. Using knowledge and research methods gained from two
years of this training child psychology, I will conduct in-depth semi-structured interviews with parent-child
pairs at risk for and affected by three different genetic conditions. These interviews will richly characterize both
parent and child experiences with and perspectives on communicating parental genetic risk information and
assess the perceived readiness of the minor child to receive parental genetic risk information from both the
perspective of the parent and minor child. The proposed study will generate novel data on minor’s readiness to
receive parental genetic risk information, how both parents and minor children think about the communication
process, the values of each parents and minor children, and potential divergences between how parents and
minor children think about the communication process. The proposed study will also generate elements of an
intervention that may be used by parents and/or health professionals to assess minor children’s readiness to
receive genetic risk information, based a child’s unique developmental stage ...

## Key facts

- **NIH application ID:** 10283134
- **Project number:** 1K99HG012085-01
- **Recipient organization:** MAYO CLINIC ROCHESTER
- **Principal Investigator:** Kelsey Stuttgen Finn
- **Activity code:** K99 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $1
- **Award type:** 1
- **Project period:** 2021-09-22 → 2021-12-17

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10283134

## Citation

> US National Institutes of Health, RePORTER application 10283134, Assessing Minor Children’s Readiness to Receive Genetic Information (1K99HG012085-01). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10283134. Licensed CC0.

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