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Fundamentals

The request arrives in your inbox, seemingly innocuous. It is an invitation from your employer to participate in a new wellness initiative, one designed to support your health and vitality. The program promises rewards, perhaps a discount on your insurance premium or other financial incentives, in exchange for your participation.

This participation, however, requires you to share information. It asks for blood samples, for answers to detailed health questionnaires, and for a window into your personal biology. A feeling of dissonance arises. You are asked to trade private information for a workplace benefit, and a quiet internal calculus begins.

How much of your personal health narrative are you willing to share? This question, felt by millions of employees, resides at the very heart of a complex legal and ethical landscape governed by two foundational pieces of federal legislation ∞ the (ADA) and the (GINA).

These regulations are protective instruments. Their primary function is to safeguard your personal and ensure that your employment status is never contingent upon your biological makeup or predispositions. They establish a boundary between the employer’s legitimate interest in a healthy workforce and the employee’s fundamental right to medical privacy.

Understanding this boundary is the first step in navigating the world of with confidence and self-advocacy. The architecture of these laws acknowledges that your health data is uniquely sensitive. It is a detailed blueprint of your current state of being and can reveal insights into your potential future health challenges. Consequently, the sharing of this information must be a choice, made freely and without undue pressure.

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The Protective Shield of the ADA

The Americans with Disabilities Act provides a broad shield against discrimination based on a wide array of health conditions. Its reach extends far beyond visible disabilities, encompassing a vast spectrum of physiological functions. When an program asks you to complete a (HRA) or undergo a biometric screening, it is making a disability-related inquiry.

It is collecting data that could reveal a condition, such as diabetes, heart disease, or a metabolic disorder, that is protected under the ADA. Because of this, the law stipulates that your participation in such a program must be truly voluntary. The term “voluntary” is not a suggestion; it is a legal standard.

It means you cannot be required to participate, nor can you be penalized for choosing not to. Likewise, you cannot be denied health coverage or be subject to any adverse employment action for declining to share your personal health information.

For a that involves medical questions or examinations to be permissible under the ADA, it must be “reasonably designed to promote health or prevent disease.” This standard ensures the program is a genuine effort to improve employee health.

A program that is overly burdensome, collecting vast amounts of data without a clear connection to a supportive health outcome, or one that functions as a means to shift costs to employees with chronic conditions, would fail this test. The structure of the program must be rooted in a legitimate health purpose, transforming it from a data-gathering exercise into a supportive resource for the employee’s well-being.

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GINA and the Sanctity of Your Genetic Blueprint

The Act adds another, more specific, layer of protection. It focuses on your genetic information, a category that includes not only your own genetic tests but also the medical history of your family. GINA makes it illegal for employers to use this information in any decisions related to your employment, such as hiring, firing, or promotion.

It also places strict limits on an employer’s ability to request or purchase this information in the first place. When a wellness program questionnaire asks about whether your parents or siblings have had certain conditions, it is requesting genetic information. GINA’s protections are activated at this point.

The law recognizes that your family’s health history can be used to make predictive judgments about your own future health risks. To prevent this form of predictive discrimination, GINA establishes a high wall around this data. While there are narrow exceptions, the general rule is that employers cannot offer you incentives in exchange for your genetic information.

This includes information about the health of your children and, with very few exceptions, your spouse. The act treats your genetic blueprint and that of your family as privileged information, shielding it from the transactional nature of wellness incentives.

The ADA and GINA work in concert to ensure that an employee’s participation in a wellness program is a matter of genuine, uncoerced choice, protecting the sensitive biological data at the core of an individual’s health identity.

The interaction of these laws creates a complex regulatory environment for employers seeking to design wellness programs. They must carefully balance their desire to foster a healthy workforce with their legal obligation to protect employee privacy and prevent discrimination.

The structure of the program, the nature of the information collected, and the value of the incentives offered are all subject to intense legal scrutiny. This scrutiny has led to a dynamic and often-changing set of rules issued by the (EEOC), the federal agency tasked with enforcing these laws.

The legal landscape has seen significant shifts, with courts and regulators debating the precise point at which a financial incentive becomes coercive, turning a “voluntary” program into a de facto mandate.

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Participatory versus Health Contingent Programs

To navigate this landscape, it is essential to understand the distinction between two primary types of wellness programs. The regulations treat them very differently, and the level of protection you have depends on the design of the program your employer offers.

A participatory wellness program is one where the incentive is provided simply for taking part. You might receive a reward for completing a health risk assessment, attending an educational seminar, or undergoing a biometric screening, regardless of the results. The reward is tied to the act of participation itself.

A health-contingent wellness program, on the other hand, requires you to meet a specific health-related goal to earn your reward. This could involve achieving a certain body mass index (BMI), lowering your cholesterol to a target level, or demonstrating that you are tobacco-free. These programs are further divided into two subcategories:

  • Activity-only programs ∞ These require you to perform a health-related activity, like walking a certain number of steps each day, but do not require you to achieve a specific outcome.
  • Outcome-based programs ∞ These require you to attain a specific health outcome, such as a target blood pressure reading. These programs must always offer a reasonable alternative standard for individuals for whom it is medically inadvisable or unreasonably difficult to meet the primary goal.

The legal requirements, particularly concerning the size of the permissible incentive, differ significantly between these program types. The ongoing debate within the EEOC and the courts centers on how to apply the ADA’s “voluntary” requirement and GINA’s strict protections to these different models, ensuring that the promise of a reward does not erode the foundation of employee choice.

This distinction is not merely technical; it is the central mechanism through which the law attempts to balance the goals of corporate wellness with the rights of the individual employee.

Comparing Wellness Program Structures
Program Type Incentive Basis Primary Regulatory Consideration
Participatory Completion of an activity (e.g. filling out a form, attending a class). Ensuring participation is voluntary and information is confidential. Incentive limits have been a subject of intense debate, with proposals leaning toward “de minimis” values.
Health-Contingent (Activity-Only) Completion of a physical activity (e.g. a walking program). Must offer a reasonable alternative for individuals unable to complete the activity. Incentive limits are generally tied to HIPAA regulations.
Health-Contingent (Outcome-Based) Meeting a specific health metric (e.g. target cholesterol level). Must offer a reasonable alternative standard. Incentive limits are generally higher but are strictly regulated under HIPAA, the ADA, and GINA.

Your journey toward personal health optimization is profoundly intimate. It involves understanding the complex interplay of your own unique biochemistry, metabolic function, and hormonal signaling. When your employer’s wellness program intersects with this journey, it enters a space protected by law. The are not obstacles to wellness.

They are the guardrails that ensure the path toward health is one you choose to walk, armed with information and free from coercion. They affirm that the custodianship of your most personal data remains, rightfully, with you.

Intermediate

The foundational principles of the ADA and GINA establish a clear mandate ∞ participation in a wellness program that collects health information must be a voluntary act. Yet, the translation of this principle into practice creates a complex operational reality for employers and a landscape of nuanced choices for employees.

The central tension lies in the definition of “voluntary.” At what point does a financial reward cease to be an encouragement and become a form of economic coercion, compelling individuals to disclose sensitive information they would otherwise keep private? The Equal Employment Opportunity Commission (EEOC) has grappled with this question for years, leading to a series of regulations, legal challenges, and proposed revisions that directly impact the design of modern wellness incentives.

Understanding these mechanics is critical for any individual seeking to engage with a corporate wellness program on their own terms. The rules dictate not just the flow of dollars, but the flow of your personal biological information.

They determine the conditions under which your employer can gain access to data points that touch upon every aspect of your physiological self, from your metabolic efficiency to your endocrine balance. This is a domain where clinical data and legal frameworks merge, and where your knowledge of the system empowers you to protect your health narrative.

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The Incentive Puzzle and the 30 Percent Threshold

For many years, a central figure in the regulatory framework was the 30 percent incentive limit. This rule, derived from regulations under the Health Insurance Portability and Accountability Act (HIPAA), was adopted by the EEOC in 2016 as a benchmark for what could be considered a “voluntary” program under the ADA and GINA.

The rule permitted an employer to offer a reward or penalty of up to 30 percent of the total cost of self-only health insurance coverage. For example, if the total annual premium for the lowest-cost, self-only plan was $6,000, the maximum permissible incentive for participating in the wellness program would be $1,800.

This threshold also applied to that required meeting a specific health outcome. For programs designed to prevent or reduce tobacco use, the incentive limit could be as high as 50 percent of the cost of coverage.

However, this framework was successfully challenged in court. Advocacy groups, notably the AARP, argued that an incentive of this magnitude was coercive for many workers. For a lower-wage employee, an $1,800 penalty for non-participation could be financially devastating, effectively eliminating any semblance of a voluntary choice.

The court agreed, vacating the EEOC’s rules in 2017 and sending the agency back to the drawing board. This legal decision created a period of significant uncertainty for employers and left a critical question unanswered ∞ what level of incentive is legally permissible?

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The Shift toward a “de Minimis” Standard

In response to the court’s decision, the EEOC issued new proposed rules in early 2021 that signaled a dramatic shift in its regulatory posture. The new guidance proposed that for a wellness program to be considered voluntary under the ADA, any incentive offered for participation could only be “de minimis.” This term, meaning minimal or trivial, represents a significant departure from the 30 percent threshold.

The EEOC provided examples of de minimis incentives, such as a water bottle or a gift card of modest value. The core logic is that such a small reward is unlikely to coerce an employee into disclosing protected health information against their will. This de minimis standard would apply to any program that is merely participatory, where the employee provides health information (like through an HRA) without being required to meet a health goal.

This proposed change reflects a deeper validation of the employee’s right to privacy. It acknowledges that the decision to share one’s personal metabolic and endocrine data should be driven by a desire for health knowledge, not by a significant financial inducement. It re-centers the concept of “voluntary” around intrinsic motivation rather than extrinsic reward.

The regulatory pendulum has swung from a defined percentage-based incentive toward a “de minimis” standard for many programs, reflecting a greater emphasis on protecting employees from economic pressure to share their private health data.

Crucially, the proposed rules carved out an important exception. The higher incentive limits, such as the 30 percent threshold, could still apply to programs, but only if those programs are part of an employer’s group health plan. This creates a critical distinction.

A standalone HRA that offers a large gift card for completion would be impermissible. However, a comprehensive disease-management program for diabetes, integrated within the and requiring participants to meet certain goals (like an improved HbA1c level), could still utilize the larger incentive structure established under HIPAA. This distinction attempts to link significant rewards to programs that are demonstrably and directly involved in managing established health conditions under the umbrella of a formal health plan.

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How GINA Further Restricts Information from Families

The Nondiscrimination Act introduces its own set of stringent limitations, particularly concerning the health information of an employee’s family members. GINA’s protections are robust and create a nearly impenetrable barrier against employers incentivizing the disclosure of family medical history. The 2016 rules allowed a limited incentive for a spouse’s participation, but the 2021 proposed rules sought to align this with the ADA’s de minimis standard.

Under the proposed framework, an employer can only offer a to an employee in exchange for their spouse or other family members providing health information. An employer is explicitly forbidden from offering any incentive for an employee’s children to provide their health information. Furthermore, the law strictly prohibits offering incentives in exchange for the results of a genetic test from anyone. This creates a clear and bright line:

  • Employee’s Own Information ∞ For participatory programs, incentives must be de minimis. For health-contingent programs integrated with a health plan, they can be larger.
  • Spouse’s Health Information ∞ Incentives are limited to a de minimis value. An employer could offer a small gift card to a spouse for filling out an HRA, but could not offer a significant premium reduction.
  • Children’s Health Information ∞ No incentives may be offered for the disclosure of health information.
  • Genetic Test Information ∞ No incentives may be offered in exchange for the actual genetic information (e.g. from a DNA test) of the employee or any family members.

This layered approach reflects the sensitive nature of familial health data. Information about a spouse’s health or a child’s condition is considered part of the employee’s “genetic information” because it speaks to the heritable and shared environmental factors that influence health. GINA ensures that an employee is never put in the position of having to persuade a family member to disclose private medical details in order to secure a financial reward at work.

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Biometric Data and the “reasonably Designed” Standard

The ADA’s requirement that a wellness program be “reasonably designed to promote health or prevent disease” has profound implications for the type of data collected. This is where the legal framework directly intersects with a personalized, systems-based approach to health. A program that simply collects data for the sake of collection, or uses it to identify high-cost employees, is not reasonably designed. A legitimate program must use the collected information to provide value back to the employee.

Consider the biometric data often collected in these programs:

Common Biometric Markers and Their Clinical Significance
Biometric Marker System Assessed Clinical Relevance and “Reasonably Designed” Application
Hemoglobin A1c (HbA1c) Glycemic Control / Metabolic Health Provides a three-month average of blood sugar levels. A program using this data is reasonably designed if it offers follow-up support for individuals with elevated levels, such as nutritional counseling or connection to a diabetes prevention program.
Lipid Panel (Total Cholesterol, LDL, HDL, Triglycerides) Cardiovascular Health Assesses risk for heart disease. The program should provide educational resources on diet and exercise, or referrals to a physician for individuals with dyslipidemia.
Blood Pressure Cardiovascular Health A primary indicator of cardiovascular strain. A reasonably designed program would include resources for stress management, diet, and, if necessary, medical follow-up for hypertension.
Body Mass Index (BMI) / Waist Circumference General Metabolic Health A crude but common measure of adiposity. A program using this must do more than just report the number; it should offer resources for exercise and nutrition, acknowledging the limitations of BMI as a standalone metric.
High-Sensitivity C-Reactive Protein (hs-CRP) Inflammatory Status Measures systemic inflammation, a root factor in many chronic diseases. A sophisticated and well-designed program could use this marker to guide recommendations on diet, stress reduction, and sleep hygiene.

A truly “reasonably designed” program, from a clinical translator’s perspective, would not stop at these basic markers. It would seek to understand the interconnectedness of these systems. It would recognize that elevated blood sugar is not just a number, but a signal of insulin resistance that has profound effects on hormonal balance and inflammation.

The legal standard of “reasonably designed” provides an opening for employees to question programs that are superficial in their approach. If a program collects your data but offers no meaningful, personalized feedback or support, it may fail to meet this critical ADA requirement. The law, in this sense, pushes toward a more holistic and clinically valid model, one that respects the complexity of human biology and the individual’s journey toward optimizing it.

Academic

The regulatory architecture of the ADA and GINA, as it pertains to employer wellness programs, represents a complex negotiation between public health objectives and the inviolability of individual biological privacy.

From an academic standpoint, this legal framework can be analyzed as a societal attempt to resolve the inherent conflict between a corporate desire for a healthier, less costly workforce and the bioethical principle of personal autonomy over one’s own physiological data.

The ongoing oscillation in EEOC rulemaking, from the 30 percent safe harbor to the proposed “de minimis” standard, is a testament to the difficulty of drawing a bright line between permissible encouragement and impermissible coercion. A deeper, systems-level analysis reveals that the current legal structure, while well-intentioned, may be ill-equipped to address the accelerating sophistication of both wellness technologies and our understanding of human biology.

The core of the academic inquiry is this ∞ do the ADA and GINA, as currently interpreted, adequately protect the modern employee from new forms of discrimination based on highly granular, predictive health data, while still allowing for the potential benefits of clinically sophisticated wellness interventions? The answer requires an exploration that moves beyond legal statutes into the realms of endocrinology, metabolic science, and data privacy in the age of personalized medicine.

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The ADA’s “disability” and the Endocrine System

The ADA’s definition of “disability” is a cornerstone of its protective power. It includes any physical or mental impairment that substantially limits one or more major life activities. This definition is expansive and covers a vast range of physiological states, including the function of the endocrine system.

Conditions such as diabetes and thyroid disease are clearly recognized disabilities. However, the application of the ADA becomes more nuanced when considering subclinical hormonal variations that are increasingly the focus of advanced wellness and longevity protocols.

For instance, consider the male hormonal state often termed “andropause,” characterized by a decline in testosterone levels. While severe hypogonadism requiring Testosterone Replacement Therapy (TRT) would likely qualify as an impairment of the endocrine system, what about the far more common age-related decline that produces symptoms like fatigue, reduced muscle mass, and cognitive fog?

An employer-sponsored wellness program that screens for testosterone levels could identify individuals in this gray area. If the program then ties a significant financial incentive to “optimizing” these levels, it raises profound ADA questions. Is the employer implicitly defining a normal age-related process as a “disability” to be managed? This action could be viewed as a “subterfuge for violating the ADA,” using a wellness framework to make distinctions based on an employee’s underlying physiological state.

A similar complexity arises in the context of female hormonal health, particularly during the perimenopausal transition. A wellness program that tracks menstrual cycle regularity or hormonal markers associated with menopause is collecting data about the functioning of the Hypothalamic-Pituitary-Gonadal (HPG) axis.

Fluctuations in this system are a normal biological process, yet they can be linked to conditions like Polycystic Ovary Syndrome (PCOS), a recognized metabolic and endocrine disorder. A program that is not carefully designed could easily stray from promoting general health into making disability-related inquiries that require strict adherence to the ADA’s voluntariness standard.

The law’s capacity to protect employees hinges on its ability to differentiate between wellness promotion and the unauthorized diagnosis or management of conditions that fall under its protective umbrella.

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GINA’s Blind Spot ∞ Phenotypic Data and Predictive Power

GINA offers what appears to be a robust shield against genetic discrimination. It explicitly restricts employers from requesting, requiring, or purchasing “genetic information,” which includes genetic tests and family medical history. However, the statute’s focus on genotype and family history creates a potential blind spot in the face of advanced biometric analysis.

The science of phenotyping ∞ measuring the physical and biochemical traits of an organism ∞ can generate data that is powerfully predictive of genetic risk, without ever directly sequencing a gene.

Consider a sophisticated wellness program that goes beyond a basic lipid panel. Imagine it utilizes an advanced assay like NMR LipoProfile, which measures the number and size of lipoprotein particles (LDL-P, small dense LDL), and combines this with markers for inflammation (hs-CRP), insulin resistance (HOMA-IR), and oxidative stress (Lp-PLA2).

An algorithm analyzing this dataset could generate a highly accurate risk score for future cardiovascular events, a risk that is heavily influenced by genetics. The employer has not requested a “genetic test,” yet it has acquired data that serves as a direct proxy for genetic predisposition. This raises a critical academic question ∞ Does the acquisition of highly predictive phenotypic data circumvent the spirit, if not the letter, of GINA?

The current legal framework does not explicitly address this issue. GINA’s protections are triggered by the source of the information (a genetic test, a family member) rather than its predictive power. As wellness programs evolve from simple biometric screenings to complex, algorithm-driven health assessments, this gap in the law will become increasingly significant.

An employer could potentially build a detailed “risk profile” of its workforce based on phenotypic data, creating the very potential for discrimination that GINA was designed to prevent, all while technically complying with the statute.

The legal frameworks of the ADA and GINA, conceived in an earlier era of biometric data, face profound challenges in regulating the predictive power of modern phenotypic analysis and the nuances of subclinical endocrine monitoring.

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How Might a Legally Compliant yet Clinically Advanced Program Function?

Designing a wellness program that is both clinically meaningful and legally compliant requires navigating a narrow and complex path. Such a program would need to prioritize employee autonomy and data privacy above all else, structuring its interventions as a service to the employee rather than a data extraction tool for the employer.

  1. Data Anonymization and Third-Party Administration ∞ To insulate the employer from receiving protected health information, the program must be managed by a trusted third-party clinical entity. The employer would receive only aggregated, anonymized data on workforce health trends, never individual results. This structure is essential for GINA compliance and for mitigating ADA risks.
  2. Focus on Education and Autonomous Action ∞ The program’s primary output for the employee should be education. Instead of simply flagging an elevated HbA1c, the program would provide a detailed, personalized report explaining what the marker means within the broader context of metabolic health. It would offer a menu of resources ∞ access to nutritionists, exercise physiologists, or referrals for medical consultation ∞ that the employee can choose to engage with autonomously. The incentive would be tied to the initial act of engagement (the screening and educational review), keeping it within the “participatory” framework and thus subject to the de minimis standard, preserving the voluntary nature of any subsequent action.
  3. Strict Adherence to the “Reasonably Designed” Standard ∞ The program must be ableto demonstrate its clinical validity. This means using evidence-based markers and providing interventions that are appropriate and supportive. For example, if screening for inflammatory markers, the program must offer concrete, evidence-based strategies for reducing inflammation through diet and lifestyle. A program that collects esoteric data without providing a clear path to actionable improvement would likely fail the “reasonably designed” test.

The ultimate challenge lies in the incentive structure. The current legal climate, leaning toward a de minimis standard for participatory programs, makes it difficult for employers to financially justify the significant cost of a clinically sophisticated wellness platform.

This may have the unintended consequence of encouraging employers to offer only superficial, low-cost programs that provide little genuine health value, or to push the boundaries of the “health-contingent” exception by linking large incentives to narrow, outcome-based targets that may not reflect an individual’s overall systemic health. The tension between creating a powerful incentive for engagement and preventing economic coercion remains the central, unresolved dilemma at the intersection of corporate wellness and anti-discrimination law.

References

  • Winston & Strawn LLP. “EEOC Issues Final Rules on Employer Wellness Programs.” 17 May 2016.
  • U.S. Equal Employment Opportunity Commission. “Final Rule on Employer Wellness Programs and the Genetic Information Nondiscrimination Act.” 81 FR 31143, 17 May 2016.
  • Groom Law Group. “EEOC Releases Much-Anticipated Proposed ADA and GINA Wellness Rules.” 29 January 2021.
  • K&L Gates. “Well Done? EEOC’s New Proposed Rules Would Limit Employer Wellness Programs to De Minimis Incentives ∞ with Significant Exceptions.” 12 January 2021.
  • SHRM. “EEOC Proposes ∞ Then Suspends ∞ Regulations on Wellness Program Incentives.” 28 January 2021.
  • U.S. Equal Employment Opportunity Commission. “Final Rule on Amendments to the Regulations Under the Americans with Disabilities Act.” 81 FR 31125, 17 May 2016.
  • AARP v. EEOC, 267 F. Supp. 3d 14 (D.D.C. 2017).
  • Robbins, D. L. & Crocker, T. P. “The Uncertain Future of Workplace Wellness Programs.” Journal of Health Care Law & Policy, vol. 22, no. 2, 2020, pp. 295-326.
  • Schmidt, H. & Vokinger, K. N. “The Use of Genetic Information in Health-Contingent Wellness Programs ∞ A Legal and Ethical Analysis.” The Hastings Center Report, vol. 48, no. 3, 2018, pp. 27-37.
  • Mello, M. M. & Rosenthal, M. B. “Wellness Programs and the Affordable Care Act.” The New England Journal of Medicine, vol. 369, no. 18, 2013, pp. 1681-1683.

Reflection

You stand at the intersection of your personal health journey and your professional life. The knowledge of the ADA and GINA provides you with a map and a compass. These are not just abstract legal doctrines; they are tools of empowerment that affirm your sovereignty over your own biological narrative.

The path to vitality is deeply personal, a unique calibration of your body’s intricate systems. It is a process of listening to the subtle signals of your and understanding the language of your metabolism. This journey requires data, but the decision of who to share that data with, and under what conditions, is yours alone.

As you encounter wellness initiatives, you are now equipped to ask more precise questions. Is this program designed to genuinely promote health, or is it a mechanism for data collection? Is the incentive offered a gentle encouragement, or does it feel like a pressure you cannot refuse?

Does the program respect the sanctity of your family’s health story? Your ability to pose these questions, to yourself and to those who administer these programs, shifts the balance of power. It transforms you from a passive participant into an active, informed custodian of your own well-being.

The ultimate goal is a state of functional health, where you operate with clarity, energy, and resilience. The information gained from understanding these regulations is a foundational step. It clears the path of potential coercion and protects your private information, allowing you to focus on the substantive work of optimizing your own complex and remarkable biological system. The journey forward is one of self-knowledge and self-advocacy, built upon the bedrock of protected choice.