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Mind Moves

Change management consultancy guiding behavior shifts

Data Governance & Policy Subject Matter Expert

Privacy & Data ProtectionUpdated on Nov 13
ContractRemote in USA$125 - $135 /hr

About the Job

Requirements

  • Demonstrated experience governing sensitive or controlled-access data, including interpreting consent conditions, data-use limitations, access requirements, authorization rules, and data-sharing agreements.
  • Proven ability to translate policy, contractual, regulatory, and ethical requirements into clear, implementable, and testable technical specifications, permission models, governance metadata, and acceptance criteria.
  • Understanding of data privacy, confidentiality, re-identification risks, data linkage, secondary use, and the challenges of enabling legitimate research while protecting individuals and respecting applicable restrictions.
  • Experience defining or evaluating access-control frameworks, permission matrices, authorization workflows, audit requirements, and data-use controls; ability to identify policy gaps, ambiguous requirements, conflicting obligations, and edge cases requiring further review.
  • Ability to collaborate effectively with data scientists, software engineers, security specialists, and architects to translate governance requirements into system designs and assess whether implemented controls satisfy agreed-upon requirements.
  • Demonstrated ability to assess competing requirements, distinguish essential safeguards from areas where flexibility may be appropriate, and recommend practical, defensible approaches that balance privacy, compliance, and scientific utility.
  • Excellent written and verbal communication skills, including explaining complex governance and privacy concepts to technical and nontechnical stakeholders and producing clear requirements, decision records, evaluation criteria, and project documentation.
  • Experience collaborating across multidisciplinary teams and engaging policy owners, researchers, technical teams, and other stakeholders to resolve questions, clarify requirements, and build consensus.
  • Must be located in the United States and authorized to work in the United States without sponsorship, now or in the future.

Responsibilities

  • Lead development of the Governance Metadata Model, defining machine-readable representations of consent conditions, data-use limitations, access tiers, authorization requirements, data access requests, Data Access Committee scope, and audit records.
  • Translate consent conditions, data-use limitations, and applicable Data Use Certification or Data Use Agreement terms into implementable permissions, decision rules, and technical requirements.
  • Define governance requirements and acceptance criteria for a governed-access interface prototype, including authorization, audit logging, and data egress controls.
  • Identify ambiguous, conflicting, or incomplete requirements and work with NIH stakeholders to establish documented interpretations and defensible implementation approaches.
  • Design the governance overlay and develop policy edge cases and adversarial test scenarios for a mock corpus reflecting dbGaP’s structure and accession conventions.
  • Define governance and privacy evaluation criteria for assessing the suitability of synthetic data for particular development, testing, research, and sharing scenarios.
  • Collaborate with the technical team to assess disclosure risks, including memorization, re-identification, and membership inference.
  • Review findings concerning differential privacy guarantees, privacy budgets, and privacy–utility trade-offs, and contribute to interpreting and documenting results.
  • Help establish criteria for identifying when additional privacy review, institutional authorization, or restrictions on use or sharing may be necessary.
  • Contribute governance and privacy criteria to the review of controlled-access, model-to-data, and synthetic data approaches, as well as to preregistered evaluation criteria and project scorecards.
  • Advise on applicable NIH and federal requirements for handling controlled-access genomic data within the project’s secure environment.
  • Lead preparation of governance and privacy sections for project deliverables, including the data specification, the Verification and Disclosure-Risk & Leakage Report, the final report, and the transition package.
  • Collaborate with NIH staff, the Mind Moves technical team, and supporting partners to resolve governance questions and document decisions.

Desired Qualifications

  • Familiarity with dbGaP, the NIH Genomic Data Sharing Policy, Data Use Certifications, and NIH security requirements for controlled-access data.
  • Understanding of human genetics, genomic research workflows, controlled-access repositories, and governance challenges associated with secondary use of genomic and health data.
  • Familiarity with the GA4GH Data Use Ontology and GA4GH Passports.
  • Familiarity with synthetic data generation, differential privacy, privacy-preserving analytics, or techniques for evaluating disclosure risks.
  • Experience with machine-readable governance metadata, automated compliance checks, standardized data-use conditions, or policy-as-code.
  • Experience with federal contracting or NIH, NLM, or other HHS agencies, and familiarity with relevant research governance, privacy, and security frameworks.
  • Experience developing governance specifications, standard operating procedures, workflow definitions, decision frameworks, and implementation guidance.
  • Experience facilitating discussions among stakeholders with differing interpretations or priorities to reach practical, well-documented decisions.
  • Experience with federal contracting, or with NIH, NLM, or other HHS agencies.
  • Background in human genetics, biomedical, or public health data, such as VCF/PLINK files or GWAS studies.
  • Experience with model-to-data, trusted research environment, or secure data enclave approaches.
  • Experience on research or prototype projects with formal milestones and deliverables.
  • Five or more years of professional experience in data governance, privacy, compliance, or policy.

About the Company

Mind Moves

Change management consultancy guiding behavior shifts

Mind Moves is a Washington, D.C.-based consultancy that guides organizations through all phases of change management for products, processes, people, and the planet. Its approach centers on shifting mindsets to drive behavior change, using a structured, holistic, and human-centered methodology developed by founder Nicole Sroka, who brings two decades of real-world experience and industry credentials. The company helps mobilize and align people, collaborating with diverse stakeholders to design, build, and implement solutions that transform organizations while supporting sustainable outcomes. Mind Moves’ goal is to effectively transition organizations and people through change, with a vision of a sustainable future where change positively impacts people, profits, and the planet.

Company size
1-10
Company stage
Not listed
Total funding
Not listed
Headquarters
Leuven, Belgium
Founded
2016

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