Protect Parental Rights and Genetic Privacy: Oppose H.R. 4709

Published: Oct 6, 2025

Our Stand: At-A-Glance

  • There’s a “genomics global race” led by China. Kevin Kelly of BGI Genomics is quoted in an article titled, “China to Achieve First Nationwide Gene Database by 2049” saying, “If every person could undergo genome sequencing at birth and have that data linked to their digital medical records, the country would possess an enormous genetic repository.”
  • Here in the U.S., The Newborn Screening Saves Lives Reauthorization Act of 2025 (H.R. 4709), paves the way for the U.S. to participate. At what cost?
  • While H.R. 4709 never uses the words genomic or genome sequencing, the broadened authority, new grant language, and expanded data-infrastructure provisions makes it possible for federal funds and programs to support whole genome sequencing (WGS) of healthy babies tied to newborn screening (NBS).
  • How: H.R. 4709 strengthens support for and allows for development and funding of new screening tests/methods. The bill also supports lifetime tracking of individual data and cross-border data harmonization. 
  • With NIH’s announcement of BEACONS–Building Evidence and Collaboration for GenOmics in Nationwide Newborn Screening–and the Chinese-led agenda to sequence every person, this is an emergent concern.
  • To protect families, privacy and informed consent, we need all provisions of H.R. 4709 that allow funding of genomic screenings and/or support national and international surveillance of DNA to be removed. 
  • Because NBS happens automatically without informing, this expansion could lead to federal tracking and storage of genetic data for millions of children without true informed consent and act as a funnel into experimental and dangerous gene therapy for healthy newborns.
  • NBS was created to detect a handful of metabolic disorders. WGS goes far beyond that, uncovering information about potential adult-onset conditions and gene mutations that might not ever cause a problem.  
  • Why It Matters
    • Privacy: A genome can never be “unshared.” Once collected, it may be linked to medical, insurance, or government databases for decades.
    • Informed Consent: Will parents know how the data will be used, the specific issues being screened for and the probabilities of those issues ever becoming a problem or the experimental nature of the treatment?
    • Emotional Impact: Testing for uncertain or adult-onset conditions can create lifelong anxiety for families without improving outcomes.
    • Gene therapy is dangerous and experimental. 
  • The Solution
    • Keep whole genome sequencing completely separate from newborn screening.
    • Stop the national lifelong surveillance of individual genomes. 
  • Take Action Now
    1. Click to email your Congressman and urge them to oppose H.R. 4709.
    2. Share our one-pager with friends and family, most parents don’t know this is happening.
    3. Post on social media so we can start to garner attention to this issue.
    4. Join the Stand for Health Freedom campaign to send your letter and help protect informed consent at birth.

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Scott Kiley

Associate Director of Local Advocacy

Scott Kiley has been married to Jill Kiley for 37 years. Together they have 3 children, 3 grandchildren and reside in Florida. He is an entrepreneur having founded several businesses, one that remains today.

In battling the tyranny that unfolded during the Covid pandemic, Scott uses his organizational and entrepreneurial skills to focus on health care freedom. Scott and his wife Jill organize health freedom advocates in an effort to deliver meaningful change at a local level. Doctors, attorneys, nurses and passionate health freedom warriors make up the team. The advocates focus on their local county commissioners, city council members, school board members, sheriff and police. The advocacy work is always collaborative, respectful and educational while bring real change that enhances health care freedom. Team effort success has come in the form of local legislation through resolutions and ordinances.

Scott and his wife Jill share a vision of uniting every county within their state of Florida and using this unity to bring change in Tallahassee.

Jill Kiley

Associate Director of Local Advocacy

Jill earned her undergraduate degree in Psychology from Southern Illinois University and a master’s in Clinical Social Work from the University of Illinois-Chicago. As a Youth and family therapist, mother of three, and grandmother, Jill has always stayed abreast of health issues affecting our society’s physical and mental well-being.

During the COVID lockdowns, she realized that the gaslighting of the public and the straying from evidence-based medical advice from our medical authorities needed to be questioned. The flawed science around the pretrials of the COVID-19 vaccines was alarming!  Jill and her husband, Scott, decided they needed to stand up and fight back locally against the deceptive narrative invoked against our society and continue advocating for our God-given rights

Jill and her husband, Scott, have become the local conduits of truth in a society of censorship. They have coordinated with activists in their community to educate local officials, resulting in impactful changes to local legislation to protect residents and their freedoms. “Bringing Truth to Light gracefully, opens doors to dialog and spurs curiosity for truth.”

Jill Hines

Directory of Advocacy
A former banker turned homeschool mom, Jill Hines began researching alternatives to conventional medicine in 2010 and what she discovered changed the trajectory of her life. She corrected a worrisome health issue, and embraced a natural approach to wellness. Advocating for informed consent and parental rights became a full-time mission when she joined the board of the Georgia Coalition for Vaccine Choice and later became the co-director of Health Freedom Louisiana. Due to her advocacy efforts during the COVID crisis, Jill was one of 25 Louisianans selected by Central City News as “a hero of the constitutional crisis.” She was also presented the Impact Award for Outstanding Public Service from the government watchdog organization Citizens for a New Louisiana. Jill now represents hundreds of millions of Americans who experienced censorship due to the Biden administration's efforts to suppress disfavored speech as a plaintiff in the landmark lawsuit Missouri v. Biden. Jill holds a marketing degree from Louisiana Tech University and now passionately “sells” health freedom full-time. Serving as Stand for Health Freedom’s advocacy director provides an incredible opportunity to advance the growing movement to preserve the sacred right to refuse unwanted medical interventions for ourselves and our children without fear of retribution.
“We have lived through a terrifying societal, psychological, and medical experiment which afforded us a knowledge that our forefathers tried to impart and we can no longer ignore: Our freedom is tenuous. For our children’s sake, the time is now to take a stand for health freedom.”

Chrissy Scott

Executive Assistant and Social Media Manager

A labor and delivery nurse with a lifelong passion for maternal and fetal health, Chrissy Scott left her job of 19 years after learning the truth about the harms caused by the medical system. In 2009, she was mandated by her employer to receive the H1N1 vaccine during her first trimester of pregnancy with her second child. She was assured that the vaccine was “safe and effective” for pregnant women, but her son was born with a kidney defect that could have been fatal. She didn’t connect the dots to vaccine injury until several years later when the declining health of her oldest son drove her to seek answers outside of allopathic medicine.

This personal journey ignited in her a new passion for truth and transparency in health care. As SHF’s Executive Assistant, Chrissy facilitates communication and local advocacy initiatives alongside Leah Wilson for their home state of Indiana. She also manages and creates graphics for SHF’s social media accounts and the website’s swag shop.

Chrissy earned her nursing degree from Anderson University and served her entire career at her local hospital. While she’s no longer a floor nurse, her five very active boys frequently test her nursing skills! She homeschools her children and has been co-owner of a successful home décor sign business with her sister.

“Parents, being the experts on their own children, are best suited to make decisions for the well-being of their family. To do this properly, they must be given full and accurate information and be free from force or coercion.”

Ellen Chappelle

Writer/Editor

Ellen Chappelle serves as SHF’s resident wordsmith. A seasoned writer and editor, she’s enthusiastic about ensuring that our content is clear, concise, and inspiring.

Ellen is most energized by working on projects that transform lives. A truth seeker as well as a journalist, she’s disturbed by the lack of accuracy in today’s media and determined to help share fact rather than fiction. And having found greater healing with alternative approaches, she’s also passionate about preserving our freedom to make informed health choices.

Past projects include serving as regional editor of a dog magazine, color and trend specialist for a small cosmetics company, arts columnist, newspaper reporter, ghostwriter, and creator of website content for artists and small businesses.

With a degree in journalism and theatre, Ellen is also a performer. She enjoyed singing and dancing on a cruise ship and traveling with a national musical theatre tour, as well as recording industrial videos, television commercials, and radio voiceovers. She also creates handcrafted jewelry in wire, chain maille, and fused glass.

“Despite what some would have us believe, the fact remains that this nation was founded on biblical principles by people who wanted freedom to worship God and live their lives without government involvement. It’s never been more critical to fight for those rights.”

LEAH WILSON

Executive Director and Co-founder

An attorney with a background in complex litigation and advocacy, Leah Wilson is passionate about children’s health and has researched and worked on child welfare issues for more than a decade.

The overmedication of children in foster care as a form of behavior management is what compelled Leah to become an advocate and foster parent. During her time as a court-appointed special advocate for abused and neglected children, Leah witnessed the rampant use of psychiatric drugs among foster kids. She also discovered that, in addition to many extensive requirements, the state had a policy that all foster children and foster families be fully vaccinated, without exception. Through her involvement in law, health and the foster care system, it became abundantly clear to Leah that the single most important issue affecting child welfare in the United States is the practice of one-size-fits-all medicine via medical mandates. This motivated Leah to expand her advocacy beyond foster care to all children nationwide and to start Stand for Health Freedom (SHF) in 2019.

A graduate of the Saint Louis University School of Law, Leah holds dual bachelor degrees in political science and Spanish from Indiana University. In addition to her advocacy work with SHF, Leah is the owner and former operations director of MaxLiving Indy, one of the largest natural health centers in the Midwest. She is also an educator on holistic health as well as a sought-after speaker on issues ranging from religious rights to greening your home.

“Parental rights and religious freedom are God-given natural rights that cannot arbitrarily be taken away by government authorities. Parents are the single most important factor in a child’s success; I stand in full support of this sacred relationship.”

Sayer JI

Director and Co-founder

Sayer Ji is a widely recognized researcher, author, lecturer, activist, and educator on natural health modalities. Among his many roles, he is an advisor to Stand for Health Freedom, a reviewer and editor of the International Journal of Human Nutrition and Functional Medicine, an advisory board member of the National Health Federation, a steering committee member of the Global GMO Free Coalition, and the co-founder and CEO of Systome Biomed Inc., a revolutionary scientific validation framework.

Most notably, Sayer is the founder of Greenmedinfo.com, the world’s most widely referenced, evidence-based natural health resource of its kind. He founded the platform in 2008 to provide an open access, evidence-based resource supporting natural and integrative modalities. Today, Greenmedinfo.com has more than a million visits per month, serving as a trusted resource on myriad health and wellness topics to physicians, healthcare practitioners, clinicians, researchers and consumers worldwide.

Sayer attended Rutgers, The State University of New Jersey, where he studied under the notable American philosopher Dr. Bruce W. Wilshire. He received a Bachelor of Arts in philosophy in 1995, with a focus on the philosophy of science. His new book, Regenerate: Unlocking Your Body’s Radical Resilience through the New Biology, was released in March 2020 and is an Amazon bestseller.

“I truly believe that education will be our greatest shield against accelerating the erosion of civil liberties, including the right to bodily sovereignty, as well as the greatest catalyst for positive change on this planet moving forward.”

Bailey Kuykendoll

DIRECTOR OF OPERATIONS

Designer and visual marketer Bailey Kuykendoll began advocating for health and religious freedom and parental rights in 2014 after learning she was pregnant. A self-described skeptic, she’s not afraid to ask questions and do copious amounts of research to reach her own conclusions.

She’s also not afraid of hard work. As SHF’s Associate Director, Bailey truly keeps the organizational boat afloat. Working closely with our State Directors in each state, she ensures that SHF has calls-to-action for health-freedom bills and petitions on our website and across social media, spreading the word to encourage people to contact their legislators. She builds campaigns, graphics, website pages, and relationships.

Bailey earned a design degree from Harrington Institute of Design in 2008. She then served as a production assistant on several shows for HGTV, followed by working behind the scenes on the X Factor, small indie films, music videos, and documentaries. Bailey joined Health Freedom Florida after moving to the East Coast, becoming co-president of the grassroots organization in 2019. While at Health Freedom Florida, she successfully filed a state bill designed to stop discrimination based on your health status. She joined SHF in the fall of 2020.

“God placed a calling on my heart back in 2008 to be a part of something bigger for Him. Twelve years later, the opportunity came knocking to help others lean into their natural-born rights and take a stand for themselves and their families. I knew this is where I was called to be, and I have never looked back.”

Valerie Borek

ASSOCIATE DIRECTOR + POLICY ANALYST

Valerie Borek is a passionate advocate for health rights and family privacy. A mother of two with degrees in law and biochemistry, she is perfectly positioned to lead SHF advocates through complex health-rights policy. Her work is guided by a love for American values, uncovering truth, and a passion for empowering others. Valerie has served as SHF’s policy analyst since 2021.

Valerie’s understanding of the value of freedom to make one’s own health care choices is not just academic. Health freedom has kept her boys alive and thriving. Her choice to have home births jump-started her advocacy for health privacy. Her eldest son survived a rare and deadly cancer because her family was able to navigate medical care while holding onto values that were sometimes at odds with recommendations.

Before joining SHF, Valerie specialized in health and parenting rights at her boutique law firm, especially surrounding birth and vaccine rights. She advocated for informed consent in health care and transparent food labeling in her state. She helped found the Birth Rights Bar Association and was honored to present their argument to the Delaware Supreme Court that midwifery is not the practice of medicine, in support of a trailblazing midwife.

“Health is the foundation of how we show up in this world to love, serve, and create. Americans are blessed to live in a country that gets stronger the more we protect fundamental rights, like informed consent and privacy, so individuals and families can thrive.”

Mary Katherine LaCroix

DIRECTOR OF DEVELOPMENT AND NONPROFIT ADMINISTRATION

Mary Katherine LaCroix became involved with SHF as a volunteer in 2019 when the religious exemption for childhood vaccines was at risk in her home state of New Jersey. She believes strongly that parents have the responsibility for their children’s health, education, and faith formation and that only they have the right to make medical decisions and manage their care.

She has worked in fundraising for more than 25 years at various educational, cultural, human services, and political organizations. A graduate of the University of Scranton, she holds a degree in History and English Literature.

Mary Katherine is thrilled to have this opportunity to work with and help grow SHF, believing that together we can achieve even greater impact in protecting our rights and caring for our loved ones. She enjoys spending time with her husband, two children and large extended family, as well as volunteering to support the special needs community.

“Parents are taught that they must trust the experts. That’s what we did, until we learned that the experts can be wrong and don’t always know what is best for your child. Parents should instead feel empowered by their natural, God-given ability to advocate and care for their children. SHF is here to give them the tools to do just that.”

Sheila Ealey

Political Analyst

Dr. Sheila Lewis Ealey is the founder and former director of the Creative Learning Center of Louisiana, a therapeutic day school for children who are on the autism spectrum or struggling with other nonverbal intellectual disabilities. The wife of a former U.S. Coast Guard Officer, she is also the mother of four children. Her son was diagnosed with severe autism spectrum disorder at 18 months. He is now a young man and considered moderate and emerging.

Sheila and her twins were featured in the documentary “Vaxxed.” She has traveled extensively, advocating for medical freedom. She continues to educate disenfranchised parents about their fundamental rights to religious and philosophical exemptions, their ability to live sustainably on a limited budget, and the importance of nutrition and biomedical interventions for optimum health with autism. She also writes individual homeschool curriculums for parents of children with autism or intellectual disorders. Sheila is a trustee for the Autism Trust, USA, and on the board of directors of Children’s Health Defense.

Over the past 20 years, she has educated herself to use natural healing modalities for the body and brain. Her formal education includes degrees in communication, special education curriculum, and a doctorate in Educational Leadership in Special Education. Sheila serves as an assistant content advisor and political analyst for SHF.

“It is not the Constitution’s job to protect our liberties, as it is not a philosophical document but a legal one. Its purpose is to limit the powers and authority of our federal government in hopes of preventing an intrusion upon our unalienable rights. We are obliged to maintain our government within its limits.”

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