# Decision-Making for Patients Born with Differences of Sex Development (DSD)

> **NIH NIH R01** · UNIVERSITY OF MICHIGAN AT ANN ARBOR · 2020 · $153,654

## Abstract

ABSTRACT
Disorders (or differences) of sex development are congenital conditions in which development of
chromosomal, gonadal, or anatomic sex is atypical; they comprise a spectrum of medical conditions affecting
~1% of the population and are associated with increased risk to physical health and well-being across the
lifespan. For every person with a newly identified DSD, there may be multiple clinical management options to
consider (e.g., gender of rearing, surgical intervention, extent of genetic testing). Clinical management in DSD
is in a state of flux with disagreements within and between healthcare specialties, advocacy, and patient
communities regarding what constitutes optimal care.
Implementation of bioethical principles in healthcare is predicated on a doctor-patient relationship in which the
patient is competent to engage in shared decision-making (SDM) and is provided with balanced information
regarding risks and benefits of all available clinical management options. Pediatric decision-making, in
particular involving young children, presents the challenge of determining how best to balance parent rights in
determining what is in the child’s “best interests” with the child’s right to bodily autonomy and self-
determination.
An aim of the parent R01 is curriculum development intended to sensitize providers to tension between varying
stakeholder group values and priorities (in particular, children and their parents) in the SDM process. The
parent R01 concludes without establishing a roadmap for SDM that accounts for differential valuing of
healthcare processes and outcomes according to stakeholder group (provider, parent, patient). SDM, informed
consent, assent, and permission reflect foundational pillars of bioethics, yet these constructs do not
automatically inform processes by which they can reliably be achieved. We therefore propose to employ user-
centered design principles to create a series of patient decision aids (PtDAs) that address the key index
decisions faced by parents of young children with DSD and which meet certification standards of the
International Patient Decision Aid Standards (IPDAS) Collaboration.
At present, the opportunity for providers and parents to share in clinical decision-making processes for infants
and young children with DSD is being challenged in the courts and several state legislatures with calls for a
moratorium on any elective genital surgery. The significance of this supplement rests in its objective to
translate evidence regarding overlapping and distinct stakeholder perspectives regarding optimal care into a
series of PtDAs that ensure decisions by parents are informed, more likely to be aligned with family values and
associated with reduced risk of decisional regret. This approach holds the promise of providing an ethical
alternative to universal legislative strictures on the practice of medicine.

## Key facts

- **NIH application ID:** 10128603
- **Project number:** 3R01HD086583-04S1
- **Recipient organization:** UNIVERSITY OF MICHIGAN AT ANN ARBOR
- **Principal Investigator:** DAVID Eric SANDBERG
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $153,654
- **Award type:** 3
- **Project period:** 2016-09-14 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10128603

## Citation

> US National Institutes of Health, RePORTER application 10128603, Decision-Making for Patients Born with Differences of Sex Development (DSD) (3R01HD086583-04S1). Retrieved via AI Analytics 2026-05-27 from https://api.ai-analytics.org/grant/nih/10128603. Licensed CC0.

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