# Identifying strategies to reveal genetic results over the lifespan

> **NIH NIH K99** · BRIGHAM AND WOMEN'S HOSPITAL · 2024 · $179,820

## Abstract

PROJECT SUMMARY/ABSTRACT
The widespread sequencing of healthy babies is imminent: at least a dozen research projects have recently
launched, and several companies offer newborn genetic screening panels. A newborn’s genome can contain
health information of relevance across their lifespan — as a baby, later in childhood, and in adulthood. This
poses a timing issue: if babies are sequenced near birth, when should this information be revealed? A
proposed vision for the future of genomic medicine is to reveal information as it becomes relevant, to the
child’s parents and later, if desired, to the individual. This would necessitate the genome being kept “on file,” to
be used as a resource over time. This strategy may promote the ethical rollout of lifelong genomic medicine by
promoting the developing child’s autonomy and optimizing the balance of benefits to risks. However, the
feasibility of this strategy, the details of its implementation, and its implications have yet to be explored in a
rigorous and empirical manner. Perhaps other approaches are preferable. A second, simplified, strategy would
reveal all childhood-relevant information at birth and then give the individual the option of receiving adult-onset
information at age 18. A third strategy would reject using the genome as a resource over time, and just
generate one report for a baby, potentially including adult-onset information. This strategy may be preferable
because the use of the genome as a resource raises complex ethical, legal, and social implications (ELSI),
including data control, privacy, consent, legal obligations, and decision making about when information
becomes relevant. For these different strategies, this project will 1) Determine their feasibility, 2) Assess their
ELSI, 3) Understand the preferences of parents from diverse backgrounds, and 4) Develop consensus on the
necessary and desirable features for a strategy to sequence babies near birth, possibly using the genome as a
resource over time. The project will have impact by producing concrete, evidence-based and ethically framed
recommendations for implementers of newborn sequencing. The candidate was originally trained as a
computational biologist, was formerly employed in the genomics industry, and is currently an ELSI scholar. Her
goal is to become an independent investigator working in the context of clinical research informing the adoption
of genomic medicine to identify, assess and address ELSI questions, ultimately to ensure that genomic
medicine works to the benefit of all. To accomplish this goal, this proposal focuses her training efforts on a)
developing skills in conducting surveys, b) developing expertise in Delphi methods, and c) refining skills in
conceptual and normative analysis. The project will leverage the BabySeq cohorts, the world’s first empirical
studies of comprehensive genomic sequencing in healthy newborns, directed by members of her mentorship
team. The proposed training will make the candidate...

## Key facts

- **NIH application ID:** 10912024
- **Project number:** 5K99HG012809-02
- **Recipient organization:** BRIGHAM AND WOMEN'S HOSPITAL
- **Principal Investigator:** Anna Lewis
- **Activity code:** K99 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $179,820
- **Award type:** 5
- **Project period:** 2023-09-01 → 2025-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10912024

## Citation

> US National Institutes of Health, RePORTER application 10912024, Identifying strategies to reveal genetic results over the lifespan (5K99HG012809-02). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10912024. Licensed CC0.

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