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Dear friends and colleagues,

The Equal Employment Opportunity Commission (EEOC) has released a proposed rule regarding the Genetic Information Nondiscrimination Act (GINA) and wellness programs. Similar to regulations under the American with Disabilities Act proposed earlier in 2015, this rule, if finalized in its current form, would severely undermine the protections ensured by GINA. 

In effect, the proposed rule redefines “voluntary” participation in a wellness program, and would allow wellness programs to penalize employees and their spouses up to 30% of their entire health insurance cost if they refuse to answer questions related to their health status. To put this in real terms, the average cost of a family health plan this year is $17,545, meaning the maximum annual penalty, on average, could reach more than $5,200 per family, in addition to what they are already paying. Even more troubling, under the rule’s vague definition of a “reasonably designed” program, employees could find themselves forced into participating in wellness programs that effectively mine participants’ health data on a massive scale. These programs would be able to collect “voluntary” participants’ genetic information in the form of medical records, and in the form of family health history information.

Current GINA regulations clearly state that workplace wellness programs cannot tie financial incentives or penalties to questions which request genetic information from employees, yet the proposed rule will undermine these important protections against discrimination. If employees wish to have affordable health insurance, under this rule they could be forced to give up their private medical and genetic information to wellness program vendors and their business partners. This could severely compromise participant privacy, and we fear it could ultimately dissuade individuals from participating in research programs like the Precision Medicine Initiative, for which privacy is a significant concern.

Thank you to all those who signed this letter. Please see the full list of organizations and individuals below.

Sincerely,

Sharon Terry

 

Bernadette Wilson, Acting Executive Officer

Executive Secretariat

U.S. Equal Employment Opportunity Commission

131 M Street, NE

Washington, DC 20507

December 21, 2015

 

RE: Comments on Proposed Rule, Amendments to regulations under the Genetic Information Nondiscrimination Act of 2008, RIN 3046-AB02

The undersigned individuals and organizations submit these comments in response to the EEOC’s proposed rule to amend regulations implementing Title II of the Genetic Information Nondiscrimination Act (GINA) as they relate to employer wellness programs, referred to herein as the GINA NPRM.

We write today in strong opposition to the GINA NPRM. We are deeply concerned that this rule, if finalized and in combination with the proposed rule to amend workplace wellness standards under the Americans with Disabilities Act (RIN 3046-AB01), referred to herein as the ADA NPRM, will coerce many millions of individuals to relinquish control over their personal health information and make it legal for workplace wellness programs to harvest personal health and genetic information on an industrial scale, use and share information for various commercial and other purposes, and increase the likelihood that individual’s information could be used in discriminatory or other harmful ways. 

Beyond the broad and pervasive risks this new rule presents for all Americans, we are also deeply concerned that, if finalized, the proposed rule will likely undermine recruitment in the Precision Medicine Initiative (PMI).  As announced by President Obama, the groundbreaking PMI intends to recruit one million participants and among other health data, collect genomic information to develop personalized therapies to prevent and treat disease.  This visionary initiative promises to revolutionize medicine and improve the nation’s health.  Its success rests on the ability to assure participants their personal health and genetic information will be kept strictly confidential and used only for their benefit and the stated research purposes.  However, the GINA NPRM would create an opportunity for employers to coerce people into giving up access to their personal health information, including information that might be discovered through PMI research.  With the privacy and security of personal health information threatened, people could be disinclined to participate in PMI studies and this critically important research effort would be undermined.

Three key provisions in the NPRM weaken GINA protections

Though the preamble acknowledges the unique protections for genetic information under GINA and the compelling reasons these were enacted, the GINA NPRM proposes three key changes that would greatly weaken GINA’s protections:

1. The NPRM redefines “voluntary” wellness program to mean “mandatory” for most people – Under current regulations, employers (covered entities) are prohibited from requesting individuals to take a genetic test or disclose genetic information.  One of the exceptions is if such requests are made through a voluntary workplace wellness program, meaning the covered entity neither requires the individual to provide genetic information nor penalizes those who choose not to provide it.

The GINA NPRM proposes to redefine the definition of “voluntary” in a way that would  permit employers to severely penalize families unless they provide access to their personal health information.  The maximum financial inducement in the GINA NPRMcould be as large as 30% of the cost of the group health plan (employer and employee share) and could be based on the cost of family coverage if an employee’s spouse participates in the group health plan and if the employer wants the spouse to also disclose personal health information through the wellness program.  Given the average cost of insurance coverage, this inducement very quickly becomes a significant financial penalty and one that most families cannot afford to avoid.

According to the KFF/HRET 2015 Survey of Employer Health Benefitsthe average cost of family coverage under a group health plan this year is $17,545, meaning the maximum annual penalty, on average, could reach $5,264 per family.  For some the penalty could be even greater.  For example, in 20% of firms, including some with predominantly older workers, the cost of family coverage is $20,000 or higher.  Furthermore, because Affordable Care Act (ACA) final health insurance market regulations provide for per-member rating within group health plans to take into account age and tobacco use, and permit employers flexibility to allocate group health plan contributions based on per-member rating, the wellness penalty cost could be three times higher for older workers compared to younger workers.[1] Under the GINA NPRM, this penalty could be applied to the family’s cost of participating in the health plan or it could be applied through other in-kind means, such as reductions in salary, leave or other benefits. 

Based on the national average group health plan cost, a penalty of $5,264 would constitute nearly 10 percent of the median U.S. household income in 2014 ($53,657).  Adding this amount to the cost of group health coverage would guarantee that coverage would be unaffordable for most families.  (The standard for affordable coverage under the ACA is defined as costing no more than 8.05% of income in 2015.)  This is clearly no longer an inducement, but a coercive penalty.  By proposing it, EEOC perverts the meaning of the word “voluntary” under GINA and damages the law’s fundamental protection against compelling individuals to disclose their genetic information.

The GINA NPRM attempts to counteract the problem it creates by retaining select protections for genetic information (notice rules, consent requirements, prohibition on conditioning inducements on the disclosure of genetic information) and by adding a new requirement (that prohibits conditioning participation on agreement to the sale of one’s genetic information or on the waiver of privacy protections for genetic information.)  However, these protections will be rendered ineffective by two other concerning changes proposed in the GINA NPRM:

2. The NPRM adopts a standard for “reasonably designed” wellness program that is meaningless - The GINA NPRM adopts the definition of a “reasonably designed” workplace wellness program that was originally proposed in the Bush Administration and subsequently embraced by the Obama Administration in regulations implementing the Affordable Care Act (ACA) workplace wellness standards.  This standard is intentionally vague and flexible and requires no scientific evidence of efficacy, only the sponsor’s claim that it has a reasonable chance of promoting health. The ACA rule notes that the reasonably designed standard is intended to be easy to satisfy and to allow experimentation by employers.[2] Under this definition, for example, a workplace wellness program could claim to be reasonably designed if it gathers up all available personal health information on participants – not only through health risk assessments and biometric screening, but also from participants’ medical records, health insurance claims data, and other sources – and then uses and shares information with other commercial partners who also want access to the information for marketing and other purposes.[3]  

In fact, that is how many workplace wellness programs are designed today.  Their methods of harvesting personal health information from employees and their family members are so extensive and aggressive that genetic information will inevitably be swept in with other health data. (See Attachment A for examples of wellness programs that obtain personal health data not only from health risk assessments and biometric screening, but also by accessing participant’s medical records data, health plan claims data, and wearable device data.)    Routinely, wellness program vendors obtain participants’ passive consent to these practices by including in their Terms of Use (lengthy, legal documents found at a link obscurely located on the wellness program web site) a statement that use of the website constitutes agreements to all Terms.  Individuals cannot participate in the wellness program other than through the website.  

The GINA NPRM prohibits wellness programs from conditioning participation on agreeing to the “sale” of genetic information.  However, wellness vendor Terms of Use never say they will “sell” personal information, only “share” it with their business partners, which enables them to circumvent this restriction. 

The GINA NPRM also prohibits wellness programs from conditioning participation on agreeing to waive GINA confidentiality protections.  However, privacy protections – under GINA and under HIPAA – would not prohibit “sharing” information with business partners of the covered entity as long as sharing is for purposes of administering the program.    Under the vague “reasonably designed” standard, business partners of the wellness program may claim that accessing personal health data and genetic information is necessary to provide wellness services (such as marketing running shoes or vitamins), or even to collect and analyze in an effort to find other ways to provide “reasonably designed wellness” services.

In short, the “reasonably designed” standard under the GINA NPRM permits wholesale health data mining by employer wellness programs and their business partners, by negating notice, informed consent, and privacy protections that might otherwise apply.  Wellness vendors are eager to find ways to access our health data and profit from it – as one industry official recently noted, “data is the new money” – and the EEOC’s permissive wellness rules will only bless this practice.

Today more than 46 million workers* are in large firms offering workplace wellness programs.  The GINA NPRM puts at risk the privacy of their health information and that of their family members.  Once employers are allowed to coerce participation, people may find their most private information becomes available to corporations to explore and exploit for commercial purposes.  Resulting advertising appeals and other re-disclosures increase the risk that private information will become public, including to co-workers, employers, and insurers.

3. The NPRM weakens protections for genetic information that is family medical history – The third fundamental weakening of GINA protections is accomplished by the NPRM effectively changing the definition of genetic information under federal law.  GINA defines genetic information to include information about an individual’s genetic tests and the genetic tests of an individual’s family members, as well as information about the manifestation of a disease or disorder in an individual’s family members (i.e. family medical history).  However, the NPRM would permit workplace wellness programs to compel both workers and their spouses to disclose their own personal health information, even though the spouse’s health information constitutes genetic information of the worker and vice versa, and information on both parents constitutes genetic information of their children, which the NPRM insists should not be collected under any circumstances.    

This action effectively removes family history from the definition of protected genetic information.  Family history is often the least expensive and most accessible pathway to obtaining genetic information. Underserved communities that have little or no access to advanced and innovative technology are able to construct family health histories with little effort and expense.  This allows them to manage their own health better. GINA protections for family medical history are fundamental.  However, under the GINA NPRM, information disclosed by an employee or spouse about their own health conditions, which also constitutes genetic information about their family members, would not be afforded the special protections (notice, exemption from inducements, etc.) that the NPRM says it will preserve for other genetic information.  The EEOC cannot and must not propose to undermine individual’s basic GINA protections in this way.  

The proposed rule is unnecessary and unlawful 

The stated rationale for the GINA NPRM is the need to harmonize GINA standards related to collection of genetic information through voluntary workplace wellness programs with those under the ADA NPRM (related to collection of all other health care information by wellness programs), which in turn, was proposed to harmonize with ACA workplace wellness provisions, which permit the imposition of large financial penalties on individuals who cannot meet certain health-outcomes based targets. 

However, the practical need for this NPRM has not been demonstrated.  Workplace wellness programs commonly focus on collecting health information – an activity regulated by GINA and ADA – but rarely tie financial rewards to health outcomes – an activity regulated by ACA wellness standards. Just 5% of large employer workplace wellness programs today use the health-outcomes-based incentives authorized under the ACA.  By contrast, most large employer workplace wellness programs use health risk assessments and/or biometric screening to gather personal health information from employees and their family members. A national study of workplace wellness programs by the RAND Corporation found that one-in-five workplace wellness programs are primarily screening focused and provide few if any other wellness services.  Therefore, the GINA and ADA rules governing the collection of health information by wellness programs, and the ACA rules governing what health-contingent wellness programs can do with that information, apply to distinct types of wellness programs that rarely overlap.  The protections governing information collection are important in their own right, and critically important to the employment, nondiscrimination, and privacy rights of individuals.  How they are interpreted and enforced should not be influenced by a minority of workplace wellness programs operating under ACA rules.

In addition, as many of us noted in comments on the ADA NPRM this summer, GINA and ADA rules governing voluntary wellness programs are not in conflict with ACA wellness rules.  As Congress acted to permit workplace wellness program to use health-outcomes-based incentives under the ACA, it did not amend GINA or the ADA to change the definition of a voluntary wellness program under either law.  Nor did Congress preface the ACA wellness provisions with the proviso, “notwithstanding any other provision of law…” – as it did in 20 other instances within the ACA – to indicate that ACA wellness standards were intended to supersede GINA and ADA standards. 

Congress’ decision to enact the ACA without such language demonstrates its intent that GINA and the ADA have parallel applicability to wellness programs.  The Obama Administration recognized this legal fact in its 2013 regulation to implement ACA wellness provisions.  That regulation explicitly and correctly stated that ACA wellness provisions had “no effect on other laws,” and that compliance with ACA wellness provisions “is not determinative of compliance with any other provision of … any other …Federal law including the ADA …and the Genetic Information Nondiscrimination Act of 2008…”[4] For the EEOC to now propose changes to GINA in ways that Congress did not authorize is beyond the Agency’s legal authority.

By so radically changing the meaning of “voluntary” workplace wellness program under GINA and the ADA, EEOC undermines protections under both laws that protect workers and their family members from involuntary release of their personal health and genetic information.  That is also beyond what Congress has legislated and so beyond the legal authority of EEOC to propose.

 

Recommended changes to the NPRM

1. Define “voluntary” to mean voluntary – The preamble to the NPRM notes that some employers have expressed confusion and uncertainty as to when health-contingent wellness incentives permitted under the ACA may be in conflict with the ADA and GINA. 

We urge that a better and legally defensible response by the EEOC would be to strike the NPRM provision at §1635.8(b)(2)(ii) permitting inducements up to 30% of the group health plan cost; restore language in the final regulation at §1635.8(b)(2)(i)(A) defining voluntary to mean that individuals are neither required to provide genetic information nor penalized if they choose not to provide it; strike language in the final regulation at §1635.8(b)(2)(ii) suggesting that employers may offer financial inducements to complete health risk assessments; and provide additional clarification that voluntary wellness programs must be entirely voluntary with all financial and in-kind incentives prohibited.  We also urge the Commission to adopt parallel changes to the ADA regulation.

2. Adopt stronger standards for “reasonably designed” wellness programs that request genetic information and other personal health information – Any workplace wellness program that requests genetic information and/or other personal health information should be required to meet standards for “reasonably designed” commensurate to the serious implications of requesting such sensitive information.  Unless a meaningful standard for “reasonably designed” is adopted, privacy and nondiscrimination protections for genetic information will be undermined.

We urge that GINA and ADA standards for a reasonably designed wellness program include a requirement that programs show scientific evidence that their program will promote health and prevent disease.  Further reasonably designed programs should be restricted to collect no more than the “minimum necessary” health information that is directly linked to the wellness program services and activities.  Programs should also be required to demonstrate that they meet this standard by describing the specific health and genetic information that will be requested;  the specific services or interventions (including those provided by business partners of the employer or wellness program vendor), evidence that specific wellness services and interventions are likely to promote health and prevent disease, and evidence that specific wellness services and interventions require collection of the specific genetic and health information requested.

The GINA NPRM adopts other elements of the reasonably designed definition from the ACA rule and from the ADA wellness NPRM.  These include requirements that workplace wellness programs not be overly burdensome, a subterfuge for discrimination, highly suspect in the methods used to promote wellness, unreasonably intrusive, or intended merely to shift costs to individuals.  However, none of these standards are enforceable without data. 

We urge that employers who collect genetic and health information through workplace wellness programs must be required, at a minimum, to report data to federal regulators on the type and amount of incentives used, the incidence of incentives, and the effect of incentives on costs borne by employees and their families vs. the employer.  Such programs also should be required to submit data measuring their impact on promoting health and preventing disease.

In addition, wellness programs (and their vendors) should report specific information on the nature of their wellness programs including the services and interventions involved.  Wellness programs should disclose the names of all of business partners that can access participants’ genetic and/or health information and describe “services” they provide and payment received for those services.  Wellness programs that generate significant revenue from sharing participants’ genetic and other personal health information should not be considered “reasonably designed” to promote health or prevent disease. 

3. GINA protections must apply to all genetic information, including family medical history – The GINA NPRM seems not to recognize that family medical history is genetic information.  By permitting wellness programs to compel disclosure of health information about family members of individuals – spouses and parents – it permits programs to compel disclosure of genetic information.

We urge that no exception should be allowed for plans to offer inducements to employees’ spouses or other family members to disclose information about the spouse’s (or other family member’s) own current or past health status.

4. Notice requirements must be strengthened and authorization should never be passively obtained – Current GINA regulations require voluntary wellness programs to obtain prior, knowing, voluntary and written authorization to collect genetic information, which may include authorization in electronic format.  This requirement is only met if the authorization form is (1) written so the individual is reasonably likely to understand it, (2) describes the type of genetic information that will be obtained and the general purposes for which it will be used, and (3) describes restrictions on disclosure of genetic information[5] Importantly, notice and authorization requirements are not meaningful in programs that are not voluntary.  Individuals who cannot afford to pay the penalty for not participating will also feel compelled to provide authorization.

Typically wellness vendors today provide notice that is not readily understood or sufficiently descriptive, and most obtain passive authorization from participants.  Terms of use and other privacy practices are described in arcane and lengthy legal documents that broadly and permissively authorize the collection, use, and re-disclosure of participants’ health information, including genetic information.  These “notices” and “authorizations” typically are hidden behind obscure links that most people will not see or read.  All include a statement that use of the website constitutes agreement to all terms, often equating this to an electronic signature.

We urge the EEOC to examine notice, authorization, and information collection practices by wellness vendors and revise notice standards under GINA and the ADA.  With respect to notice standards, EEOC should draft a template notice with instructions for workplace wellness programs to specifically describe in clear, understandable terms, genetic information and other personal health information that the program will collect and how, specifically, each element of information will be used by the program (including by each business partner.)  The template notice should also specify that the covered entity sponsoring the workplace wellness program will be strictly liable for any breach or misuse of program information and should include instructions on how to file a complaint with the EEOC. 

We also recommend the EEOC should draft a template authorization form.  EEOC should instruct covered entities that explicit and knowing authorization by a participant is required before any health information can be disclosed to a wellness program; passive authorization should not be permitted. 

Model notice and authorization forms should be required for every workplace wellness program that requests genetic and other personal health information, including programs  that offer even de minimis incentives to participate.

5. Revise GINA and ADA NPRM to ensure that covered entities are the same – The GINA wellness NPRM permits workplace wellness programs to offer inducements to an employee whose spouse (1) is covered by group health plan; (2) receives wellness services; and (3) provides information about his or her current or past health status as part of a HRA.  By contrast, the ADA wellness NPRM applies different standards to wellness programs depending on whether they are provided as part of a group health plan or separately from the group health plan.  The ADA rule does not define what it means for a wellness program to be offered as part of or separate from a group health plan. However, almost half of large employers report their wellness programs are offered separate from the group health plan.

We urge that ADA and GINA standards must be consistently applied in order to safeguard genetic information and other personal health information requested by workplace wellness programs.  All programs, whether health contingent or participatory, in or outside of health plans, should be truly voluntary, reasonably designed, and subject to meaningful notice and privacy protections. 

6. Prohibit collection of genetic information about children of all ages – The GINA NPRM proposes to prohibit inducements in exchange for current or past health status information about an employee’s children (biological and non-biological.)

We urge clarification that this prohibition extends to children of any age and not just minor or dependent children. 

7. Prohibit conditioning participation in wellness program on agreement permitting the sale of genetic information, or otherwise waiving confidentiality protections – This provision at §1635.8(b)(2)(iv) in the NPRM is important in concept, but as noted earlier, this protection will be ineffective unless wellness programs are truly voluntary and truly reasonably designed. In addition, as noted earlier, wellness program authorizations today do not include the word “sale.” Instead information is “shared” with wellness vendor business partners. 

We urge that more rigorous standards must ensure that any entity or business partner with whom genetic information and other personal health information is “shared” must be operating within an otherwise reasonably designed wellness program, meeting standards we described earlier, must be engaged in a specific wellness-related activity, and should receive only the minimum amount of information necessary to carry out the specific activity. 

8. Prohibit conditioning inducements on agreement to provide genetic information – This provision at §1635.8(b)(2)(iii) in the NPRM is also important in concept, but this protection will be ineffective unless wellness programs are truly voluntary and truly reasonably designed. 

We urge that wellness programs should not make any inquiries about genetic information unless the inquiry is directly linked to a wellness intervention that is likely, based on scientific evidence, to promote health or prevent disease.

9. Privacy protections for genetic information and other health information obtained by wellness programs must be strengthened – Additional protections are needed to safeguard the privacy of genetic and personal health information obtained by workplace wellness programs in light of many programs’ data-mining orientation, and in light of advances in technology for linking data and for re-identifying de-identified data. We are also concerned that, under the current final regulation, wellness programs are permitted to share data with employers in “aggregate terms” that do not, or are not reasonably likely to disclose the identity of an employee.  Advances in technology make it much more likely that aggregate or de-identified genetic information can be re-identified. [6]

We urge that covered entities, including their business partners, should be prohibited from re-identifying any aggregate data or de-identified data they may receive.   We also urge that other protections provided under the privacy provisions of HIPAA should be included under GINA confidentiality protections – specifically, individuals should have a right to obtain copies of all personal information collected as part of the wellness program, the ability to challenge completeness and accuracy of such information, a right to obtain a listing of all parties to whom such information was disclosed and a description of any compensation or consideration received for that disclosure.  Individuals also should have the ability to request confidential communications.  Individuals also should have the right to request that all their wellness data by deleted by the employer, the wellness program administrator, and its business partners, if they decide to stop participating in the program. Finally, the covered entity must be strictly liable for any breaches to wellness program confidentiality that may occur (or harm to individuals resulting from sharing of personal health information by or with wellness program business partners), regardless of whether the covered entity or one of its business partners was at fault.  Covered entities should not be allowed to disclaim liability for harms that result from such sharing.  These protections should be included in GINA regulations, not just referenced in HIPAA.  HIPAA privacy rules will not apply in many workplace wellness programs that are outside of the group health plan.  In addition, individuals have a private right of action under GINA, but not under HIPAA.

 

Other public comment requested by the EEOC

Request comment on whether individuals offered inducements to disclose their information should be allowed to instead provide physician certification -  We strongly urge that NO inducements to disclose genetic information or other personal health information should be permitted.  In the narrow context of the NPRM as proposed, we would offer comment that an alternative to disclosing information should be provided.  Further, the certifying physician should be chosen by the individual, not the employer.  The wellness program should reimburse any fee or cost sharing incurred by the individual in obtaining such certification.  The certification should not disclose any information about the individual’s health status or other genetic information.  The certification should state only that the individual is under the care of a physician and that any medical risks are being managed, vs. under “active treatment,” as stated in the NPRM. 

Request comment on whether proposed authorization requirements apply only to wellness programs that offer more than de minimis rewards or penalties – We strongly urge that authorization and notice requirements should apply to all workplace wellness programs that make inquiries about or obtain individual’s genetic or other personal health information.  Wellness programs use many techniques, including gamification and social influencing, that aim to increase the number of participating employees without use of financial incentives.  These techniques can manipulate employees into participating and providing data.

Request comment on procedural safeguards to ensure that workplace wellness programs are designed to promote health or prevent disease and do not operate to shift costs to employees – As noted earlier, we urge that it is critically important for EEOC to adopt a meaningful definition of “reasonably designed” that would apply to any wellness programs that obtains genetic or other personal health information.  Such programs should be based on scientific evidence, not just a reasonable guess, that they will work to promote health and prevent disease.  Prohibiting use of incentives will ensure that costs are not shifted.  In the event incentives are permitted, we urge that covered entities be required to track and report data on the amount and type of incentive, its incidence, and the effect of incentives on the allocation of costs between employers and employees. 

Request comment on whether to adopt more specific guidance on the electronic storage of wellness program records – Adopting meaningful standards for reasonably designed wellness programs is an important first step to limit the amount of health information collected by wellness programs in the first place.  In addition, we note that the Precision Medicine Initiative is developing a data security framework to identity and protect against threats to security.  Any workplace wellness program that requests or gains access to genetic information should be required to adopt similar standards. 

Request comment on best practices to ensure that information about spouse’ current health status is protected from disclosure – As noted earlier, stronger standards for reasonably designed wellness programs and for privacy protections for information contained in such programs are imperative.  Covered entities that sponsor workplace wellness programs that collect or obtain personal health information must ultimately be held legally responsible for any inappropriate disclosure of health information. 

Request comment on whether wellness programs should be restricted to collect only the minimum necessary genetic information to directly support the specific wellness activities - As stated earlier, this requirement is essential and must be adopted.

Request comment on whether wellness programs should be prohibited from accessing genetic information from other sources, such as patient claims data and medical records data – As stated earlier, this requirement is essential and must be adopted.

Request comment on whether employer offer (or are likely to offer in the future) wellness programs outside of a group health plan, or use inducements to encourage employees’ spouses to provide health or genetic information, and the extent wo which GINA regulations should allow inducements provided as part of such programsData from the KFF/HRET employer health benefit survey indicate that nearly half of large employer wellness programs offer wellness benefits outside of the group health plan.  There is no definition under federal law or regulation of what it means to offer wellness programs outside of a group health plan.  We urge that all wellness programs be treated the same under the law.  The purpose of GINA and ADA is to protect against coerced disclosure of genetic and other health information by wellness programs, so how the wellness program is not material to that purpose.

Data from the KFF/HRET employer health benefit survey from 2013 also indicate that 65% of large firm workplace wellness programs are open to participation by spouses.  The survey did not collect data specifically on use of incentives to encourage participation by spouses.  It is likely to expect, however, that wellness programs oriented to data mining will seek ways to increase access to genetic information and other health data by spouses and other family members of employees.

 

In conclusion, we strongly reiterate that any employer request for genetic information or other personal health information should be subject to the strongest possible standards.  Such requests should only be permitted through wellness plans that are truly voluntary and truly reasonably designed, and even then, strong notice, authorization, and privacy requirements should apply, as should reporting requirements on employers to promote accountability and enforcement. 

Signed,

Note: Contact information will only be used to contact you regarding your signature, and will not be listed in submitted comments.

Organizations:

Academy for Eating Disorders Reston Virginia
AliveAndKickn Haworth New Jersey
Allcare Health Management System, Inc. Fort Worth Texas
Alstrom Syndrome International Mount Desert Maine
AMENSupport Maryville Tennessee
American Association on Health and Disability Rockville Maryland
American Behcet's Disease Association (ABDA) Rochester Michigan
American Society of Hematology Washington District of Columbia
American Society of Human Genetics Bethesda Maryland
Amyloidosis Support Groups Wood Dale Illinois
ARPKD/CHF Alliance Kirkwood Pennsylvania
Association for Glycogen Storage Disease Durant Iowa
Association for Molecular Pathology Bethesda Maryland
Association of Gastrointestinal Motility Disorders, Inc. (AGMD) Bedford Massachusetts
Athena Diagnostics Marlborough Massachusetts
Batten Disease Support and Research Association Columbus Ohio
Beautiful You MRKH Foundation, Inc. Bethesda Maryland
Bengin Essential Blepharospasm Research Foundation Beaumont Texas
Binge Eating Disorder Association Severna Park Maryland
BingeBehavior.com Washington District of Columbia
CADASIL Together We Have Hope Non-Profit Org Round Rock Texas
Case Western Reserve University Genetic Counseling Training Program Cleveland Ohio
CFC International Vestal New York
Cholangiocarcinoma Foundation Salt Lake City Utah
Congenital Adrenal Hyperplasia Research Education & Support Foundation (DBA: CARES Foundation Union New Jersey
Council for Bile Acid Deficiency Diseases Rockville Maryland
Council for Responsible Genetics Cambridge Massachusetts
Cranberry Fog Horseheards New York
CureCADASIL Plainsboro New Jersey
Cure HHT Monkton Maryland
Cutaneous Lymphoma Foundation Birmingham Michigan
Cutis Laxa Internationale Bons en Chablais France
DC Candlelighters Childhood Cancer Foundation Merrifield Virginia
Delaware Family Voices, Inc. Wilmington Delaware
Desert Perinatal Associates Las Vegas Nevada
Detroit Medical Reserve Corps Detroit Michigan
Dystonia Medical Research Foundation Chicaco Illinois
Eating Disorders Coalition for Research, Policy, and Action Washington District of Columbia
Everyminute.org Old Hickory Tennessee
Fabry Support & Information Group Concordia Missouri
Family Voices Washington District of Columbia
Family Voices Indiana Indianapolis Indiana
Family Voices of North Dakota Edgeley North Dakota
Family Voices NJ Newark New Jersey
Fight Colorectal Cancer Washington District of Columbia
FORCE: Facing Our Risk of Cancer Empowered Tampa Florida
Foundation for Prader-Willi Research Pasadena California
Genetic Counseling Services, Inc. Schenectady New York
Global Healthy Living Foundation Upper Nyack New York
Guardian Hands Foundation Hialeah Florida
Hadassah, The Women's Zionist Organization of American, Inc. New York New York
Hannah's Hope Fund for GAN Rexford New York
HCMA Denville New Jersey
Hepatitis Foundation International Silver Spring Maryland
Hereditary Disease Foundation New York New York
Hereditary Spherocytosis Society Hackensack New Jersey
Hermansky-Pudlak Syndrome Network Inc. Oyster Bay New York
Huntington's Disease Society of America New York New York
ICAN, International Cancer Advocacy Network Phoenix Arizona
Immune Deficiency Foundation Towson Maryland
InnoThink Center for Research in Biomedical Innovation Indianapolis Indiana
Inspire Arlington Virginia
International Society of Nurses in Genetics Davie Florida
International WAGR Syndrome Association San Antonio Texas
JScreen, Emory University Atlanta Georgia
Klippel Trenaunay Support Group Milford Ohio
Lakeshore Foundation Birmingham Alabama
Lupus and Allied Diseases Association Verona New York
March of Dimes White Plains New York
M-CM Network Chatham New York
Michigan Association of Genetic Counselors, Inc. South Lyon Michigan
MidAtlantic Chapter, Marfan Foundation Silver Spring Maryland
Minnesota Ovarian Cancer Alliance Minneapolis Minnesota
MLD Foundation West Linn Oregon
Myotonic Dystrophy Foundation San Francisco California
National Ataxia Foundation Minneapolis Minnesota
National PKU Alliance Tomahawk Wisconsin
National Tay-Sachs & Allied Diseases Association Boston Massachusetts
NBIA Disorders Association El Cajon California
Noah's Hope Downers Grove Illinois
Organic Acidemia Association Golden Valley Minnesota
Pachyonychia Congenita Project Salt Lake City Utah
Parent Project Muscular Dystrophy Washington District of Columbia
Parent to Parent USA Washington District of Columbia
Patient Advocates in Research (PAIR) Danville California
PFO Research Foundation/td> Boulder Colorado
Poiema LLC Bronx New York
Project DOCC New York New York
PXE International Washington District of Columbia
Rare Disease Perspectives LLC Sherborn Massachusetts
RASopathiesNET Altadena California
RUCDR Infinite Biologics Piscataway New Jersey
SADS Salt Lake City Utah
Sandy Rollman Ovarian Cancer Foundation Havertown Pennsylvania
Sickle Cell Community Consortium Cumming Georgia
Statewide Parent Advocacy Network Newark New Jersey
Susan G. Komen Dallas Texas
Syndromes Without A Name USA Otsego Michigan
The ALS Association Washington District of Columbia
The Ataxia Group of Denver, CO Aurora Colorado
The Association for Frontotemporal Degeneration Radnor Pennsylvania
The Bodywise Program Ann Arbor Michigan
The Empowered Patient Coalition San Francisco California
The Jewish Federations of North America Washington District of Columbia
The National Adrenal Diseases Foundation Great Neck New York
The Oxalosis & Hyperoxaluria Foundation New York New York
The Progeria Research Foundation, Inc. Peabody Massachusetts
The TMJ Association Milwaukee Wisconsin
The Transverse Myelitis Association Powell Ohio
Titin Related Muscle and Heart Disorders Pine Brook New Jersey
Tourette Association Bayside New York
Trisomy 18 Foundation Dale City Virginia
Tuberous Sclerosis Alliance Silver Spring Maryland
Utah Family Voices South Jordan Utah
VHL Alliance Boston Massachusetts
Vibrant Gene Consulting, LLC Cambridge Massachusetts
Walker Consulting Seattle Washington
XIFIN, Inc. San Diego California

 

Individuals:

Brian Abbott Virginia Beach Virginia
Jessica Adsit Beaverton Oregon
Mary Ahearn Silver Spring Maryland
Dennis Ahnen Denver Colorado
Lisa Aiello-Laws Philadelphia Pennsylvania
Michele Alatorre Lutz Florida
Carissa Alinat Dunedin Florida
Judi Allen Belmont California
Ghazal Almradi Grosse Point Woods Michigan
Russ Altman Menlo Park California
Paula Anderson San Leandro California
Ursula Anderson Palm Desert California
Gwendolyn Andress Columbia South Carolina
Stephanie Andriole New York New York
David Antonaitis Endicott New York
Stephanie Austin Haiku Hawaii
Jessica Badger Worthingon Ohio
Dixie Baker Redondo Beach California
Maria Baker Hershey Pennsylvania
John Ball Simi Valley California
Beth Barnhill Des Moines Iowa
Mona Barringer Oklahoma City Oklahoma
Tina Bartell Sacramento California
Daniel Barth-Jones New York New York
Susannah Baruch Washington District of Columbia
Susan Bassett Barefoot Bay Florida
Kerry Beake Mandurah Western Australia
Laura Beamer McHenry Illinois
Jennifer Bearce Monument Colorado
Susan Berg Grantham New Hampshire
Kendall Bergman Austin Texas
Mary Berry Middleton Wisconsin
Jodi Bewick Mcmurray Pennsylvania
Cherie Bilbie Hardfort Connecticut
Carole Bjerke Beulah North Dakota
Iris Blanchard Dayton Ohio
Lisa Blazejewski Westborough Massachusetts
David Blue Rocky River Ohio
Ellen Boles Syosset New York
Marietjie Botes Pretoria South Africa
Jeanine Breen Middle Village New York
Linda Brewer Kaysville Utah
Paullette Briggs Philadelphia Pennsylvania
Irina Brooke Rockaway Beach New York
Heidi Brott Manhattan Kansas
Katherine Brown St. Louis Missouri
Cheryl Brubaker Albuquerque New Mexico
Shannon Bryant Fremont New Hampshire
Denise Bulpitt Flower Mound Texas
Deb Burgard Los Altos California
BC Burke Brooklyn Connecticut
Suzanne Burr Toms River New Jersey
Sarah Buxbaum Jackson Mississippi
Sue Butler Anaheim California
Richard Bye Puyallup Washington
Amanda C Stratford Pennsylvania
Alexis Caldwell Richmond Virginia
Bobbie Callen Burlington Kentucky
Carmen Camacho Ashland Massachusetts
Jan Campbell Danbury Connecticut
Mary Ann Canter Greenbelt Maryland
Arthur Caplan New York New York
Susan Cappello Babylon New York
Donna Carette Manchester New Hampshire
Diane Carr San Francisco California
Christine Carter Brookeville Maryland
Heather Carter Miamisburg Ohio
Thomas Carton New Orleans Louisiana
Jennifer Casteen Columbus Ohio
Uma Chandru San Francisco California
Audrey Chapman Farmington Connecticut
Candice Charkalis Broussard Louisiana
Jenna Charlton Lakeline Ohio
Robert Chase Fall River Massachusetts
Ragen Chastain Signal Hill California
Thomas Cheng Torrance California
Amanda Chesser Lynn Haven Florida
Jennifer Christensen Houston Texas
James Christiansen Anchorage Alaska
Kristina Christy Statesville North Carolina
Surendra Chutani New York New York
Wayne Clark Ankeny Iowa
Angela Clem Dayton Virginia
Tish Clevenger Ottawa Kansas
Mary Clogston Hurley New York
Judy Colecchi Boston Massachusetts
Tamara Combs Lancaster California
John Compton Washington Grove Maryland
Diane Conjerti Uniontown Ohio
Anna Cook Dayton Ohio
Joleen Cook Dayton Ohio
Anna Cooper Santa Cruz California
Rasonda Crandall Meridian Idaho
LaTonya Croxdale Horn Lake Mississippi
Marlene Cunningham Agoura Hills California
Kai D Lakewood California
Susan Dalton Safety Harbor Florida
Judy Danberg Port Ludlow Washington
Scott Dann Beachwood Ohio
Martina Darragh Greenbelt Maryland
Gloria Davis Carrboro North Carolina
Debra Day-Salvatore New Brunswick New Jersey
Susan Delaney Camden New Jersey
Toni Delaney Willoughby Hills Ohio
Diana Denboba New Carrollton Maryland
Lara Diamond Baltimore Maryland
Alessandra Dinin Cary North Carolina
Jeannie DiVito Folsom Pennsylvania
Brandy Donaldson Mooresville North Carolina
Thomas Donaldson Mooresville North Carolina
Allison Donelan Marion Massachusetts
Dr. Teri Doolittle Lake Forest Park Washington
Michael Dougherty Littleton Colorado
Erika Downie Salisbury New Hampshire
Claire Doyle Berwick Maine
Kathryn Drake Mansfield Ohio
Jennifer Dreyfus Takoma Park Maryland
Gwen Duckworth Minneapolis Minnesota
Jennifer Dugan Rochester Minnesota
Michael Dukelow Aiea Hawaii
Dani Durand Garnett Kansas
Larry Durdel Beaverton Oregon
Mark Edwards Delta Pennsylvania
Helena Ellis Durham North Carolina
Bonnie Epstein Teterboro New Jersey
Scott Erman Clio Michigan
Patricia Everett Johns Creek Georgia
Patrick Everett Johns Creek Georgia
Phyllis Everett Evington Virginia
Susan Feinberg West Dennis Massachusets
Les Feldman Calabasas California
Stephanie Festian Grand Rapids Michigan
Corrine Fillmam Emmaus Pennsylvania
Jill Fischer Branchburg New Jersey
Laurie Fisher Boston Massachusetts
Rachael Fleurence Bethesda Maryland
Kendra Flores Worcester Massachusetts
Elena Flowers San Francisco California
Brandi Forbes Cincinnati Ohio
Keitha Forbes Jamaica New York
Peg Ford Coronado California
George Fox Gainesville Florida
William Fox Loudon Tennessee
Rebecca Freeman Santa Ana California
Miya Frick San Francisco California
Elizabeth Fullerton Atlanta Georgia
Josie Fultz Bemidji Minnesota
Jane Garvin Augusta Georgia
Suzanne Gauvreau Roseville Michigan
Amy Gaviglio Minneapolis Minnesota
Colleen Gere Stafford New York
Greg Gere Sparks New York
Kelly Gere Le Roy New York
Marcia Gere Stafford New York
Stanley Gere Batavia New York
Patricia Gibson Rockville Maryland
Mariah Gill Spearfish South Dakota
May Glasheen Dallas Texas
Marie Godfrey Portland Oregon
Cathleen Goetsch Seattle Washington
Philip Goglas III Silver Spring Maryland
Heather Goltz Humble Texas
Fran Gomez Moore Mahopac New York
Connie Goodwin Fort Wayne Indiana
Lorie Goshin Brooklyn New York
Peter Gotfredson La Jolla California
Gail Goulart Brewster Massachusetts
Jan Grady Wausau Wisconsin
Tim Grady Wausau Wisconsin
Tracey Grant Durham North Carolina
Allison Gray San Francisco California
Marcia Grayson San Antonio Texas
M Jennifer Green Bend Oregon
Charlotte Greenbarg Lutz Florida
Susan Griner Columbus Ohio
Steven Grossman La Jolla California
Jana Gunnell Lehi Utah
Tara Haarlander Chester Springs Pennsylvania
Courtney Halle Fort Myers Florida
Gregory Halle Fort Myers Florida
Kelly Halle Fort Myers Florida
Kareemah Hamdan Richmond Virginia
Mary Hander Post Falls Idaho
Paul Hander Post Falls Idaho
Mary Hardies Hillman Michigan
Melanie Hardy Rockville Maryland
Lori Harper South Jordan Utah
Peter Harris Loveland Colorado
Amie Hass Cedar Rapids Iowa
Shawna Hatch Roy Utah
Jennifer Haviland Peekskill New York
Sharon Hayden Oakland California
Ann Marie Hebert Redondo Beach California
Melanie Hecker Lighthouse Point Florida
Ross Heckman Arcadia California
Tim Hefferon Rockville Maryland
Margaret Hefner St. Louis Missouri
Lisa Helms Guba, RN Annapolis Maryland
Jackie Henderson Bensalem Pennsylvania
Ruthie Henson Hardin Kentucky
Jane Herman New York New York
Leigh Ann Higa Philadelphia Pennsylvania
Elaine Hiller    
Carolyn Hoban Hartford Connecticut
Harry Hochheiser Pittsburgh Pennsylvania
Judy Hoffman Bolton/td> Smithsburg Maryland
Marilyn Hoganson St. Paul Minnesota
Toby Hollander Portland Maine
Randee Hooton Vienna Virginia
Mary Houchin Woody Creek Colorado
Jamie Howard Lexington Kentucky
Lauren Hudak Milford Connecticut
Nancy Hutcheson Virginia Beach Virginia
Marvin Jackson Oberlin Ohio
Sylvia Jackson Oberlin Ohio
Sandra Jenkinson Indianpolis Indiana
David Jennings Plano Texas
Sandra Jessmonh Alea Hawaii
Colleen Johnson New Brighton Minnesota
Lowell Johnson New Brighton Minnesota
Virginia Jolander Carmel Maine
Judy Jones Bellaire Michigan
Roberta Jones Fairhope Alabama
Stef Jones San Carlos California
Emily Jordan Columbia South Carolina
Elizabeth Joseph Cupertino California
Jeff Joyce Marshfield Wisconsin
Robin Karlin Pittsburgh Pennsylvania
Laird Kelly New York New York
Alice Herber Atlanta Georgia
Alice Herber Marietta Georgia
Lisa Kilbane Odessa Florida
Amy Killingsworthr Ooltewah Tennessee
Linda Kincaid Derry New Hampshire
Camron King Elk Grove California
Kevin Kinney Saint Charles Missouri
Heather Kirkwood Arlington Virginia
Terrie Kitchner Stratford Wisconsin
Steven Klein Greensboro North Carolina
Rebecca Knowles Rochester New York
Karen Kovak Portland Oregon
Elena Kowalsky Manhasset New York
Mary D. Kracun La Jolla California
Joanne Kreindel Manhattan Beach California
Heather Krenke Owatonna Minnesota
Susan Krivacic Austin Texas
Rebecca Kronk McKees Rocks Pennsylvania
Joseph Kunkel Beverly Massachusetts
Sandra Laird Arlington Texas
Karen Lally Jacksonville Arizona
Kylin Lammers Jacksonville Arizona
Kristofor Langlais Silver Spring Maryland
Alice Lara Salt Lake City Utah
Amanda Large Bristol Pennsylvania
Mary Leblanc West Hartford Connecticut
Nancy Lee North Richland Hills Texas
Sharon Lentino Mount Prospect Illinois
Debra Leonard Burlington Vermont
Janine Lewis Rockville Maryland
Emanuel Loeb Hialeah Gardens Florida
Gina Londre Marshfield Wisconsin
Myrna Lopez Honolulu Hawaii
Amy Lossie Silver Spring Maryland
Niki Lovick San Francisco California
Andrew Ludel Reno Nevada
Fabiana Lutti-Glenn New York New York
Heather Lynch Jefferson South Dakota
Pamela Mace Rocky River Ohio
Martha-Jean Madison Northwood New Hampshire
Julie Mak San Francisco California
Eileen Mallory Chelsea Michigan
Kristin Maloney Baltimore Maryland
Maria Mangrobang Honolulu Hawaii
Barbara Marchi Redding California
Gayle Martin Plymouth Minnesota
Lisa Martin Corcoran Minnesota
Nicki Martino Rochester Minnesota
Meredith Masiello Commack New York
Angela Mason Flagstaff Arizona
Wayne Matten Clifton Virginia
William Maurer Livermore California
Kristilyn Maxwell Harrisonburg Virginia
Jeremy McAuley Mooresville North Carolina
Vickie McAuley Mooresville North Carolina
Wayne McAuley Mooresville North Carolina
Cindy McDaniel Pottstown Pennsylvania
Rose McGee Memphis Tennessee
Rita McIntyre Marshfield Massachusetts
Kim McLaughlin Eureka California
Kate McReynolds Nashville Tennessee
Danielle Meeuws New York New York
Susan Meier Corfu New York
Laurie Middendorf E. Bridgewater Massachusetts
Matthew Might Boston Massachusetts
Beth Miller Portland Oregon
Samantha Miller Sioux City Iowa
Greg Milner Philadelphia Pennsylvania
Briana Mittleman Durham North Carolina
Pooja Mohan Houston Texas
Tim Montgomery Sarasota Florida
Lesley Morgan Sparks New York
Amanda Morris Herndon Virginia
Kim Morris Newnan Georgia
Maria Morrison Klamath Falls Oregon
Margo Moskowitz Atlanta Georgia
Adele Motlowd> Marrero Louisiana
Kathleen Mott Santa Rosa California
O. Thomas Mueller St. Petersburg Florida
Seilleen Mullen Alexandria Virginia
Loren Mumford Greenville North Carolina
Allison Ostrowski Albany New York
Shannon Osborne Seattle Washington
Flor Otero Sebring Florida
Carol Owen Klamath Falls Oregon
Renee Owen Sioux City Iowa
Lynn Pais Ann Arbor Michigan
Amy Paller Chicago Illinois
Laurie Palmer Columbus Ohio
Melissa Parisi Rockville Maryland
Rona Pasch White Bear Lake Minnesota
Richard Pauli Madison Wisconsin
Lisa Pedersen Malad City Idaho
Deborah Peetz Gilman Wisconsin
Barbara Pereya Morristown New Jersey
Marsha Peterson Emporia Kansas
Barbara Pfeiffer Bayville New Jersey
Catherine Phaneuf Weston Massachusetts
Christopher Phaneuf Weston Massachusetts
Michael Phillips Raleigh North Carolina
Stacey Pierce Livonia New York
Heather Pike Edmond Oklahoma
Robert Pilarski Columbus Ohio
Manop Pithukpakorn Silver Spring Maryland
Jennifer Pitre Cherry Hill New Jersey
Brooke Plotkin Boston Massachusetts
John Plotkin Sedona Arizona
Kimberly Plotkin Sedona Arizona
Emily Potts Hagerstown Maryland
Teri Power Amery Wisconsin
Kathryn Pratt Richardson Texas
Lori Prescott San Antonio Texas
Mohammed Rais Thibodaux Lousianna
Sowmya Ramachandran Burlingame California
Kristen Rasmussen Stratford Wisconsin
Barbara Raudonis Arlington Texas
Cindy Read Farr West Utah
Lara Reichman San Francisco California
Judy Reily Wyoming Pennsylvania
Joanna Reinwald Cambridge Massachusetts
Jose Reyna San Benito Texas
Jessica Rich-Plotkin Murrieta California
Amanda Richards Wyoming Michigan
Ken Richmond Fairfax Station Virginia
Christina Rigelsky Cleveland Ohio
Juanita Robinson Silver Spring Maryland
Linda Robinson Southlake Texas
Angela Rodriguez Tampa Florida
Mitzi Roeser Roweell Georgia
Nancy Rollinson New Haven Connecticut
Wildred Romero Colorado Springs Colorado
Diane Rose Oley Pennsylvania
William Rose North Egremont Massachusetts
Nicole Rosenleaf Ritter Bozeman Montana
Mary Ellen Rowan Laguna Beach California
Kathleen Rowley Spokane Washington
Shannon Rowley-Suver Powell Ohio
Karen Saban Naperville Illinois
Kim Sabelko Philadelphia Pennsylvania
Scott Sadinsky West Hartford Connecticut
Mary Schaeffer Chestnut Hill Massachusetts
Stephen Schaeffer State College Pennsylvania
Valerie Schaibley Seattle Washington
Barbara Schardt Auburn New York
Carol Schmidt New Brighton Pennsylvania
Paula Schmitt Poulan Georgia
Marisa Schroeder El Cajon California
Jenn Schwab East Greenwich Rhode Islan
Karl Schwartz Riegelsville Pennsylvania
Lisa Schwartz Washington District of Columbia
John Sedor Cleveland Ohio
Vicki Seibert Seattle Washington
ME Seigler Sugar Land Texas
Leighsa Sharoff New York New York
Katherine Shields Portland Oregon
Lucinda Shore Hendersonville Tennessee
Susan Siegel Richmond Virginia
Lindsey Sikora Columbus Ohio
Jennie Simpson Silver Spring Maryland
Craig Skala Downers Grover Illinois
Robert Nathan Slotnick Reno Nevada
Matthew Smith Chapel Hill North Carolina
Karen Smoots Philadelphia Pennsylvania
Jean Solis Centennial Colorado
Jacob South Savannah Georgia
Phyllis Speiser New York New York
Erica Spiegel New York New York
Ida Spruill Charleston South Carolina
Emily Starnes Longwood Florida
Mary Beth Steckr Clemson South Carolina
Stephanie Steinbart Frederick Maryland
Heather Streeter Essex Junction Vermont
Amy Sturm Columbus Ohio
Dipanshu Sur Kilkata West Bengal
Thanyachai Sura Bangkok Thailan
Jared Suver Powell Ohio
Susan Swenson Palm Harbor Florida
Michelle Takemoto Honolulu Hawaii
John Thomas Falls Church Viginia
Matthew Thomas Charlottesville Virginia
N Thompson Washington District of Columbia
Darcy Thull Pittsburgh Pennsylvania
Sharon Tieskotter Charles City Iowa
Thipwimol Tim-Aroon Rajthewi Bangkok
Susan Tinley Council Bluffs Iowa
Michelle Tipton Beulah North Dakota
Sara Tobin Port Richmond California
Terra Tolley Washington District of Columbia
Craig Tolosky Ballston Lake New York
Stacie Toothman Amherst Ohio
Tobias Toothman Amherst Ohio
Scott Topper Berkeley California
Maryanne Totaro Lester Pennsylvania
Gregory Totero Haverstraw New York
Helen Travers Miami Shores Florida
Amber Trivedi Oceanside California
Cynthia Trotter Grantville Georgia
Stuart Tsubota Brockport New York
Marcia Valbracht Des Moines Iowa
Toni Van Pelt Amherst New York
Sarah Vidal Branford Connecticut
Linda Vincent Berkely California
Danielle Wagner Waterford Works New Jersey
Jessica Walker Oceanside California
Lori Wallace San Jose California
Stacy Wanasek West Bend Wisconsin
Marilyn Wann San Francisco California
Linda Ward Spokane Washington
Maggie Ward Wichita Kansas
Sandi Ward-Zerns Walker Michigan
Douglas Waugh Bellingham Washington
Ian Weeks Peachtree City Georgia
Tammy Weirs/td> Hartford Connecticut
Katherine Welch Ponte Vedra Beach Florida
Robert West Syracuse New York
Lara White Aurora Colorado
Randy Whited Pfugerville Texas
Sara Weinke Charleston South Carolina
Mara Wilber New York New York
Samantha Wilder Williamsburg Virginia
Collin Wiles Providence Rhode Island
Julie Wilson Santa Rosa California
Kate Wilson Missouri City Texas
Sarah Witherington Villa Park Illinois
Anne Wolf Minneapolis Minnesota
Amanda Woodhull Menneapolis Minnesota
Terry Woodhull Minnetonka Minnesota
Pamela Yager Turtle Lake Wisconsin
Jeffery Yen Dundas Ontario
Kate Young Shreveport Louisianna
Nancy Zagone Goodrich Michigan
Diane Zastrow/td> San Bruno California
Sonya Zindel Sacramento California
Janice Zunich Gary Indiana

 


[1] For example, in a 3-person firm with workers age 20, 40, and 60, under per-member rating and 3:1 age rating limits, the group plan premium attributable to the 20-year-old might be $2,000, with $4,000 attributable to the 40-year-old and $6,000 attributable to the 60-year-old.  Under the Administration’s final health insurance market regulations (see 78 Federal Register at 13410), a firm has flexibility to base contributions toward each worker’s coverage based on the per-member premium; for example, the firm could contribute 80% of the per-member rate for each worker, leaving the oldest worker to pay up to 3 times as much as the youngest worker.  If wellness penalties are applied to this rating structure, older workers enrolled in family coverage could face extremely high costs for refusing to disclose their health information.

[2] 78 Federal Register at 33162.

[3] So-called “reasonably designed” workplace wellness programs already are using genetic testing.  For example, one wellness vendor offers a program that encourages individuals to undergo genetic testing for metabolic syndrome risk, even though medical experts question the validity of this test.  Under this program, participants complete an HRA and biometric screening (which they would be financially compelled to do under the NPRM) and are offered a genetic test to assess their risk of developing metabolic syndrome. The wellness vendor also markets its products – so called genetically engineered vitamins and nutritional supplements – to individuals it determines to be at risk for metabolic syndrome. Terms of Use and Privacy links on the vendor’s website note that this is a Canadian corporation, not subject to the laws of the U.S., though it also describes HIPAA protections in detail.  These documents also state that personal information collected through the wellness program can be used and disclosed to market the vendors own products and services to participants, and to send participants offers that promote the products of other businesses. Participants agree to all of these terms by simply using the wellness program website. "If you do not agree to these terms, do not use this Site." See Attachment B.

[4] 78 Federal Register at 33163.

[5] §1635.8(b)(2)(i)(B)

[6] For example, it has been demonstrated that research participants can be identified from “anonymous” DNA.  See http://www.nature.com/news/privacy-protections-the-genome-hacker-1.12940

*This section has been edited to reflect the most recent KFF/HRET survey data.

 

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