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

> **NIH NIH R01** · UNIVERSITY OF MICHIGAN AT ANN ARBOR · 2021 · $470,516

## Abstract

PROJECT SUMMARY
 Differences (or Disorders) of Sex Development (DSD) is a superordinate term encompassing congenital
conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Adopting an inclusive
definition, between 1 in 200 to 1,000 people are born with some degree of atypical sex development. Clinical
management of DSD is in a state of flux with disagreements within and between professional, advocacy, and
patient communities regarding optimal care. Advances in molecular diagnosis and surgical techniques, findings
regarding psychological outcomes in affected persons, and patient advocacy group engagement, led to a
consensus conference attended by international experts in the DSD field and patient advocacy. Consensus
recommendations included changes to diagnostic and clinical management strategies and in nomenclature
that eliminated terms considered confusing and stigmatizing; e.g., “intersex,” “hermaphroditism,”
“pseudohermaphroditism,” and “sex reversal.”
 While scientific and medical communities rapidly adopted the new nomenclature, vocal patient community
elements strongly opposed the word “disorder” - experiencing it as unnecessary pathologization of atypical
bodies that contributes to the perceived need for potentially harmful surgical “normalization” procedures. Some
affected adults now prefer the term “intersex” - referring to an identity, rather than a medical condition. Further,
little agreement exists across provider, advocacy, and patient communities regarding what constitutes optimal
care for patients and families. Clinical management topics triggering contentious debate include decision-
making over gender of rearing, genital surgery and its timing, gonad removal, and disclosing diagnostic details
to patients. Evidence of these controversies exists in medical literature, social media, and courts of law, yet a
remarkable lack of discussion, much less consensus, exists on how stakeholders value various outcomes.
There has yet to be a study designed to systematically examine how patients, parents, healthcare providers,
and other stakeholders differentially define and value optimal DSD health care delivery.
 The proposed study has the following aims: (1) Assess the importance ascribed by stakeholders to DSD
clinical management options (i.e., identify what constitutes a “successful outcome”), both immediately and in
the future; (2) Identify differential trade-off preferences (e.g., trade-offs between genital appearance, preserving
fertility, sexual function, privacy, patient autonomy) and choice processes made by different stakeholder
groups; (3) Design and pilot evidence-based curricula for stakeholders that clarify priorities, and integrate these
with evidence to facilitate informed and shared decision-making. The proposed approach to understanding
differential valuation of clinical management elements and developing data-driven curricula is potentially
generalizable to other congenital or chronic conditions i...

## Key facts

- **NIH application ID:** 10201685
- **Project number:** 5R01HD086583-05
- **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:** 2021
- **Award amount:** $470,516
- **Award type:** 5
- **Project period:** 2016-09-14 → 2023-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10201685

## Citation

> US National Institutes of Health, RePORTER application 10201685, Decision-Making for Patients Born with Differences of Sex Development (DSD) (5R01HD086583-05). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10201685. Licensed CC0.

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