Inclusive Family History

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

The Inclusive Family History Initiative

The goal of the Inclusive Family History Initiative is to improve healthcare delivery for individuals born through donor conception and adoption by incorporating these factors into the medical intake process. This involves shifting the responsibility of reporting a person's conception status to healthcare providers by updating how family history is collected.

Approximately 2–4% of the population is adopted, and while the exact number of donor-conceived individuals is difficult to determine, estimates suggest there are over one million. Knowing a patient’s genetic history can significantly enhance medical care. Just as important is recognizing when a person does not know. Acknowledging this reality can optimize the delivery of healthcare reducing the physical, emotional, and financial strain, and help decrease stigma.

This initiative has a two-pronged approach. The first prong focuses on integration into the family history section of the medical record. The second involves the education of and adoption by healthcare professionals of the need to understand diverse family structures and the importance of incorporating inclusive family history into patient care.

Studies show that over 200,000 deaths per year are attributed to medical errors, with one of the largest contributors being poor communication and inaccurate medical history.

The Inclusive Family History Initiative was developed to support transparency and optimize the delivery of care. In August of 2019, a support group of recipient participants expressed the difficulty they experience when having to communicate their child’s genetic history to healthcare providers. This highlighted a critical gap, and thus this two-pronged initiative was born.

2020: Grassroots networking began

  • 2021: Initial webinar held in July; initiative was officially launched

  • 2022: Conversations began with the Electronic Health Record Association in October

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

  • 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): GA4GH, a global organization focused on enhancing health through genomic data, collaborated with Joe Cody and Lori Metz on incorporating donor conception and adoption into the “kinship” section of medical intake forms.

Currently:

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

  • Second Prong: Provider education is underway with the first communication tool for pediatricians completed, distributed, available to guild them in understanding and navigating these conversations.

Next Steps:

  • Adoption of expanded kinship fields in medical intake records and processes by the provider community, including specific fields for donor conception and adoption

  • Education and training for the professional community on the initiative and the significance of understanding and working with different family structures

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.