This special, urgent episode of The Positive Gene Podcast steps outside our normal publishing schedule because the stakes could not be higher. Congress is considering the Patent Eligibility Restoration Act (PERA) — a bill that would once again allow companies to patent human genes and biomarkers, reversing the 2013 Supreme Court decision that made genetic testing more accessible, competitive, and affordable.

Host Sara Kavanaugh, a Lynch Syndrome (MSH6) and CHEK2 previvor, sits down with Lisa Schlager, FORCE’s Vice President of Public Policy, to break down:

• What PERA is

• Why it poses a threat to patients, families, and future research

• How gene patents have harmed patients in the past

• What returning to a monopoly system would mean for access, cost, and innovation

• Why Congress is considering this right now

• And — most importantly — what you can do in minutes to help stop it

If PERA becomes law, a single company could control testing for specific genes, raise prices, restrict access, block research, and impact the lives of millions of families navigating hereditary cancer risk and rare diseases.

This issue is time-sensitive, with Congress heading into holiday recess.

Your voice is needed now. See links to FORCE's advocacy action center to easily email your legislators!

• Resources Mentioned

  • FORCE's Advocacy Action Center - Email Your Legislators

  • FORCE's Policy & Advocacy Page - Learn more here

  • Find Your Congressional Legislator here

  • Oppose PERA. - Prewritten Social Posts from FORCE

  • Email Lisa Schlager: lisas@facingourrisk.org

  • Positive Gene Podcast Blog - read full transcript here

  • Connect with Sara on Instagram @positivegenepodcast

In today’s conversation, we dig into the part of cancer conversations that rarely makes headlines - hereditary cancer risk, prevention, and the systemic barriers that keep people from getting the care they need.

My guest, Jennifer Thompson, MS, CGC is a board-certified genetic counselor and founder of HealthyGene, a digital genetic counseling clinic designed to remove barriers to hereditary cancer risk assessment. She specializes in cancer genetics, patient advocacy, and improving early access to testing through education and telehealth.

Together, we unpack:

• Why media coverage around public figures’ diagnoses often misses the prevention angle
• Why genetic testing isn’t being offered early enough and the very real consequences
• The Angelina Jolie Effect vs. modern missed opportunities
• How legislative policies are threatening research, Medicaid access, and public health
• How people and providers can start earlier, clearer conversations
• What real self-advocacy looks like
• How to navigate family conversations about genetic risk
• The difference between clinical genetic testing and direct-to-consumer kits
• Why understanding your family history still matters most

• HealthyGene Website: https://myhealthygene.com
• Know Your Risk Quiz (free assessment for BRCA & Lynch): available on the HealthyGene homepage: https://www.myhealthygene.com/know-your-risk-quiz
• Jennifer's Blog: President Biden's Diagnosis: https://www.myhealthygene.com/post/biden-prostate-cancer-brca-risk
• Find a Genetic Counselor: https://findageneticcounselor.com

• Podcast blog + extended show notes: www.positivegenepodcast.com
• Connect with Jennifer:
  • Instagram: https://www.instagram.com/myhealthygene
  • LinkedIn: https://www.linkedin.com/company/healthygene/
• Connect with Sara/Podcast:
  • Instagram: https://www.instagram.com/positivegenepodcast/
  • LinkedIn: https://www.linkedin.com/in/sarakavanaughspeaks/
  • Website: www.sarakavanaugh.com

If you’ve ever felt like the conversation about cancer stops with treatment instead of starting with prevention, this episode is your reminder:

Knowledge is power.

It’s never too early to ask questions, learn your family history, and take steps to protect yourself and the people you love.

In this episode of The Positive Gene Podcast, Maddie Williamson, a genetic counselor and BRCA1 carrier, joins host Sara Kavanaugh to discuss what it means to navigate hereditary cancer risk as a member of the LGBTQ+ community.

Drawing from both personal experience and professional expertise, Maddie shares the challenges and insights that come with balancing genetic risk, identity, and access to care. The conversation explores how connection, understanding, and empathy can make a lasting difference in the hereditary cancer journey — for patients, families, and providers alike.

• Personal Story & Perspective — Maddie’s journey as a genetic counselor and BRCA1 carrier

• Barriers to Inclusive Healthcare — Finding affirming providers and safe medical spaces

• Insurance & Access — Navigating coverage gaps and coding complexities

• Family, Identity & Genetic Testing — How estrangement and chosen family affect care

• Representation & Research — SOGI data gaps and why inclusive study design matters

• From Allyship to Action — What providers and advocates can do to better support LGBTQ+ patients

• Maddie Williamson — Instagram: @MaddieLucy27

• FORCE – LGBTQIA+ Peer Support Group A safe space for LGBTQIA+ individuals navigating hereditary cancer risk. facingourrisk.org
• The Breasties – LGBTQ+ Support Community and resources for those impacted by hereditary breast/ovarian cancer. thebreasties.org
• Sarah Roth — Genetic Counselor & Writer: @OtherSarah
• National Society of Genetic Counselors – Find a GC Tool Search for licensed genetic counselors, including those with LGBTQ+ affirming experience. nsgc.org/page/find-a-genetic-counselor

• National LGBT Cancer Network — Affirming provider directories, support groups, and clinician toolkits. cancer-network.org

• OutCare Health — U.S. directory of culturally competent providers for LGBTQ+ patients. outcarehealth.org

• Callen-Lorde Health Center — LGBTQ+-focused healthcare and advocacy based in New York. callen-lorde.org

• GLMA – Health Professionals Advancing LGBTQ Equality Continuing education, best practices, and health policy insights. glma.org

• LGBTData.com — Inclusive public health data and SOGI visibility. lgbtdata.com

• NCCN Language Guidance — Sensitive, Respectful, and Inclusive Language for Oncology - NCCN Guidance PDF

• Advancing Health Equity for LGBTQ+ Identifying Patients with Cancer (NCCN Infographic) NCCN Health Equity PDF

• The Positive Gene Podcast is available on Apple Podcasts, Spotify, and all major platforms.
• Visit PositiveGenePodcast.com for more conversations that empower, educate, and inspire those navigating hereditary cancer risk.

Disclaimer: This podcast is for educational and informational purposes only. The views shared are based on personal and professional experiences and should not replace medical advice. Always consult with your healthcare provider, genetic counselor, or qualified medical professional regarding your individual situation.