Inclusive Family History

Everyone deserves to feel comfortable and confident when accessing medical care.

How It Started

The Inclusive Family History Initiative began in response to challenges faced by participants in a support group. Many struggled to communicate their child’s genetic history to healthcare providers, highlighting a critical gap in understanding and addressing diverse family structures.

The Goal

To improve health outcomes for donor-conceived individuals by addressing their physical, emotional, and financial well-being by providing quality healthcare in a cost-effective and efficient manner. The initiative aims to shift the responsibility of reporting genetic history from the individual to the healthcare system, reducing stigma and ensuring better care.

The Approach

This initiative takes a two-pronged approach:

  1. Inclusion in Medical Records: Ensuring that donor conception and adoption information is integrated into medical records to improve healthcare options and outcomes.

  2. Provider Education: Educating healthcare professionals about diverse family structures and the importance of incorporating inclusive family history into patient care.

Accomplishments

  • 2023: The Inclusive Medical History Initiative was presented during the Soap Box Talks at the American Society of Reproductive Medicine (ASRM) conference.

  • 2024: The ASRM Donor Task Force invited Dr. Serena H. Chen, Joe Cody, and Lori Metz to present the Inclusive Family History Initiative.

  • Global Alliance for Genomics & Health (GA4GH): The GA4GH, a global organization focused on enhancing health through genomic data, has collaborated with Joe Cody and Lori Metz. They consulted on incorporating donor conception and adoption into the “kinship” section of medical intake forms, ensuring more inclusive health data collection for families formed through donor conception, adoption, stepfamilies, and other pathways.

What Is Happening Now

  • First Prong: The integration of donor conception and adoption into medical intake forms through the GA4GH is in its testing phase, marking a significant step toward improving patient records and healthcare delivery.

  • Second Prong: Provider education is progressing, with the first communication tool for pediatricians completed and distributed to help them understand and navigate diverse family histories.

What’s Next

  • Encourage the adoption of expanded kinship fields in medical intake forms and processes by the provider community.

  • Develop and distribute expanded training materials for all healthcare professionals to ensure widespread understanding and implementation of inclusive practices.

The Inclusive Family History Initiative is driving meaningful change to ensure that all families, regardless of structure, receive equitable and comprehensive healthcare.

How You Can Help

Providers:

Adopt Inclusive Practices: Update medical intake forms to include expanded kinship fields that capture donor conception, adoption, and other diverse family structures.

Educate Your Team: Provide training for your staff on inclusive family history practices and the importance of understanding diverse family dynamics.

Advocate for Change: Share the importance of inclusive family history initiatives with your professional network and encourage adoption across healthcare systems.

Collaborate with the Initiative: Partner with us to develop tools, resources, and strategies that enhance inclusive care in your practice.

Patients:

Speak Up: Inform your healthcare providers about your family’s unique structure and advocate for the inclusion of this information in your medical records.

Request Updates: Ask your provider or clinic to update their intake forms to include fields for donor conception, adoption, or other nontraditional family structures.

Educate Providers: Share resources or educational materials, like those developed by the Inclusive Family History Initiative, to help providers better understand diverse families.

Spread the Word: Share information about the Inclusive Family History Initiative with others in your community to raise awareness and support.