Why public trust in regulators matters

A new study, led by BIO’s Dr. Leah Buchman, shows the link between public trust in regulators and support for gene drive in agriculture. Plus, April is Primary Immunodeficiency Month—the Immune Deficiency Foundation shares five things you should know. (609 words, 3 minutes, 2 seconds)

Study shows link between public trust in regulators and support for gene drive in agriculture

People who have high levels of trust in regulatory agencies are more likely to support policies that advance research on gene drive, according to a new study. 

The study: A team of Texas A&M-associated researchers, led by Dr. Leah Buchman, BIO’s Senior Manager of Regulatory Affairs, conducted a survey to gauge how public trust in key federal agencies impacts public opinion on gene drive research and gene editing in agriculture.

Why it matters: We’ve seen time and again that public trust is critically important to advance scientific innovation—whether genetically engineered crops, or health innovations like vaccines.

The key finding: “The public trusts and supports regulatory policies that allow gene drive to be researched and employed to manage agricultural pests, establishing a pathway for scientists, developers, producers, and consumers alike to realize the benefits of this technology,” the study found.

Why trust matters: “People may use cues from trusted sources to form their attitudes towards policy issues,” the study continued, “determining levels of trust in the government and its agencies is essential to forecasting and recognizing support for scientific policies.”

The methodology: The study looked comprehensively at associations between trust in relevant agencies that are responsible for regulating agriculture biotechnology—Environmental Protection Agency (EPA), Food and Drug Administration (FDA), and U.S. Department of Agriculture (USDA)—and public preference for public policy that advances or stymies the adoption of emerging and complex biotechnologies, like gene drive in agricultural systems.

The bottom line: “Public trust in the USDA, FDA, and EPA, as it relates to policy actions for gene drive, provides possible clarity of the role or roles that these agencies might take in the regulatory process,” the study concluded. 

Primary Immunodeficiency Month shines light on underdiagnosed condition

Of the 6 million people with a primary immunodeficiency (PI), between 70-90% don’t know why they are feeling sick or having problems with infections, reports Bio.News.

“PIs are a group of more than 450 rare, chronic conditions where a part of the body’s immune system is missing or does not function correctly,” according to the Immune Deficiency Foundation. Symptoms can include fatigue, problematic infections, autoimmune symptoms, fever, and more.

April is Primary Immunodeficiency Month, to raise awareness among doctors and patients about PI, which is severely underdiagnosed. Treatments like immunoglobulin replacement therapies, individualized for each patient, can be effective in controlling PI—once it's identified.

Here are 5 things to know:

1. People can wait decades for a diagnosis. It helps to know when to ask about it.
2. Common variable immune deficiency (CVID), found in 1 of 25,000 people, is the most common type of PI. (The musician Ke$ha has it.)
3. Many people with a PI don’t know they have it.
4. People with a PI may not look sick.
5. PI is often misdiagnosed as an autoimmune condition, which is dangerous because autoimmune treatments suppress the immune system, while those with PI need immune system enhancement.

Knowledge is power: Knowing to look for PI can empower patients and doctors to control the condition. Meanwhile, research into treatments continues and patients can participate.

Learn more: For Primary Immunodeficiency Month, we worked with the Immune Deficiency Foundation (IDF) to help raise awareness—learn more.  

More Health News:

The New York Times: Chinese company under congressional scrutiny makes key U.S. drugs
"BIO, a trade group for the biotechnology industry, is also surveying its members about the impact of disconnecting from WuXi companies. John F. Crowley, BIO’s president, said the effects would be most difficult for companies that rely on WuXi to manufacture complex drugs at commercial scale. Moving such an operation could take five to seven years.

'We have to be very thoughtful about this so that we first do no harm to patients,” Mr. Crowley said. “And that we don’t slow or unnecessarily interfere with the advancement of biomedical research.' "

President Biden’s Tuesday: Starting a three-day campaign trip to Pennsylvania with a fundraiser in Scranton, per NBC.

What’s Happening on Capitol Hill: Senate Appropriations subcommittees hold hearings on 2025 budget requests with Health and Human Services (HHS) Secretary Xavier Becerra and Agriculture Secretary Tom Vilsack. House Education & Workforce Subcommittee on Health, Employment, Labor, and Pensions will hold a hearing, ERISA's 50th Anniversary: The Path to Higher Quality, Lower Cost Health Care. Other hearings will cover SBIR and other SBA programs, and the Biden administration’s trade policy agenda.