10 Civil Liberties Questions for MAHA Leaders

RFK Jr. and his MAHA movement have gained access to real power just as our public health, health care, and biomedical research systems enter a transformative era. How will they handle what's coming?

The voters that Robert F. Kennedy Jr. brought with him when he joined forces with Donald Trump were a key factor in the President-elect’s success. Many of them are medical freedom advocates, civil liberties supporters, and critics of our current health systems.

Those systems are on the brink of transformative changes that are the culmination of decades of legal, regulatory, and technological developments. The changes promise to bring us leaps forward in medicine and health services, but they also come with some major risks to civil liberties and human rights.

How will Trump, RFK Jr., and other leaders of the Make America Healthy Again (MAHA) movement address those risks?

Here are 10 topics they should address for the voters who got them over the finish line:

1. Biometric Access. Oracle Health is replacing password access with biometric access in all of its systems. How will MAHA leaders advocate for individuals who do not want to use biometric systems to access their medical records and do not want their biometric identifiers to be stored in health information systems? How will MAHA leaders prevent the health care system from becoming inaccessible to people who refuse to use a biometric access system?

2. Public Health / Health Care Convergence. The public health system is merging with the health care system and creating a unified, interoperable data infrastructure. Under current laws, this provides public health authorities with unprecedented access to individuals’ personal health information. What will MAHA leaders do to give individuals the ability to control where their data is stored and opt out of having their personal information stored in centralized state and federal databases if they so choose, without losing access to health care?

3. Social Determinants of Health Data Collection. With social determinants of health (SDOH) being added to health information code sets such as ICD-10 (soon ICD-11), SNOMED, and LOINC, information about all aspects of an individual’s life can be encoded and tracked in medical records. How will MAHA leaders advocate for people who want to limit the information included in their health records by excluding social determinants of health data?

4. SDOH Uses. Social determinants of health (SDOH) allow a wide range of non-medical factors to be classified as health issues. SDOH data, including data from consumer data brokers, is currently used for risk scoring of individuals by health systems. How will MAHA leaders prevent SDOH from being used to create scoring systems, restrictions, and requirements that are applied outside of health care settings?

5. Clinical Ambient AI and Medical Scribes. Major electronic health record systems like Epic and Oracle Health are integrating ambient AI and medical scribes to automate record keeping for health care providers by listening to interactions between providers and patients and automatically generating records and analysis. How will MAHA leaders advocate for patients who want to opt out of having all of their interactions with providers automatically recorded?

6. Preventative Medicine Overreach. The public health world is very focused on preventative health care and population health. New pharmaceuticals designed to prevent cancer and other serious diseases are being referred to as “vaccines.” What will MAHA leaders do to prevent an extensive list of new pharmaceutical products from being classified as vaccines and mandated on the public as a public health measure, with no legal liability for drug makers under NCVIA?

7. Consumer Data Laundering. Health data brokers sell consumer data on individuals to health care systems, especially to flesh out SDOH data on local populations. This launders consumer information into health information that public health authorities have access to if they deem such access necessary for public health purposes. How will MAHA leaders address this channel for government access to citizens’ personal information?

8. Public Health Exceptions to Privacy Rules. Public health authorities have broad legal powers to access individuals’ protected health information when they deem it necessary for public health purposes. Those powers were established before the current expansion of the health information system to include social determinants of health and other non-medical information. How will MAHA leaders address the need to update public health powers under HIPAA and other laws in light of this expansion?

9. Health Care / Research Convergence. Health data infrastructure systems like Oracle Health are integrating electronic health records with biomedical research tools. While this holds the promise of rapid advances in medical efficacy and individualized medicine, some individuals may want to opt out of having their personal health information used for research purposes in general or for specific studies. How will MAHA leaders ensure that they have the ability to do that without losing access to health care?

10. Health Information Right to Be Forgotten. Would MAHA leaders advocate for giving individuals the legal ability to have their personal health information “forgotten,” that is, deleted from state, federal, and private health information databases? On a related note, how will MAHA leaders ensure that legally mandated deidentification processes for public health and research data keep pace with reidentification technology?

Bonus Questions

Here are another couple questions I have for the MAHA crew that are not strictly related to civil liberties:

1. Value-Based Care Incentives. Value-based care contracts can include financial incentives that influence prescription and vaccination recommendations by health care providers. How will MAHA leaders address this, now that value-based care is gradually replacing fee-for-service payment? Will they advocate for providers to disclose to patients and clients which pharmaceutical products they are being incentivized to recommend by pay-for-performance and other financial incentives?

2. Public-Private Partnerships. Private sector organizations are increasingly being brought under the public-health/health-care umbrella, with government funding being devoted to workforce expansion in both the public and private sectors. As more private entities are connected to the public sector through both funding and data infrastructure, there is a de facto expansion of government health bureaucracy that is not well accounted for. How will MAHA leaders address this?