Sign On to Preserve GINA Protections
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.
Bernadette Wilson, Acting Executive Officer
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 Benefits, the 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. 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. 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.
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…” 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 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.
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. 
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 programs – Data 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.
Note: Contact information will only be used to contact you regarding your signature, and will not be listed in submitted comments.
|Academy for Eating Disorders||Reston||Virginia|
|Allcare Health Management System, Inc.||Fort Worth||Texas|
|Alstrom Syndrome International||Mount Desert||Maine|
|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|
|Association for Glycogen Storage Disease||Durant||Iowa|
|Association for Molecular Pathology||Bethesda||Maryland|
|Association of Gastrointestinal Motility Disorders, Inc. (AGMD)||Bedford||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|
|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|
|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|
|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|
|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|
|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|
|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|
|Vibrant Gene Consulting, LLC||Cambridge||Massachusetts|
|XIFIN, Inc.||San Diego||California|
|Brian Abbott||Virginia Beach||Virginia|
|Mary Ahearn||Silver Spring||Maryland|
|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|
|Dixie Baker||Redondo Beach||California|
|John Ball||Simi Valley||California|
|Beth Barnhill||Des Moines||Iowa|
|Mona Barringer||Oklahoma City||Oklahoma|
|Daniel Barth-Jones||New York||New York|
|Susannah Baruch||Washington||District of Columbia|
|Susan Bassett||Barefoot Bay||Florida|
|Kerry Beake||Mandurah||Western Australia|
|Susan Berg||Grantham||New Hampshire|
|Carole Bjerke||Beulah||North Dakota|
|David Blue||Rocky River||Ohio|
|Ellen Boles||Syosset||New York|
|Marietjie Botes||Pretoria||South Africa|
|Jeanine Breen||Middle Village||New York|
|Irina Brooke||Rockaway Beach||New York|
|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|
|Suzanne Burr||Toms River||New Jersey|
|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|
|Thomas Carton||New Orleans||Louisiana|
|Uma Chandru||San Francisco||California|
|Robert Chase||Fall River||Massachusetts|
|Ragen Chastain||Signal Hill||California|
|Amanda Chesser||Lynn Haven||Florida|
|Kristina Christy||Statesville||North Carolina|
|Surendra Chutani||New York||New York|
|Mary Clogston||Hurley||New York|
|John Compton||Washington Grove||Maryland|
|Anna Cooper||Santa Cruz||California|
|LaTonya Croxdale||Horn Lake||Mississippi|
|Marlene Cunningham||Agoura Hills||California|
|Susan Dalton||Safety Harbor||Florida|
|Judy Danberg||Port Ludlow||Washington|
|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|
|Alessandra Dinin||Cary||North Carolina|
|Brandy Donaldson||Mooresville||North Carolina|
|Thomas Donaldson||Mooresville||North Carolina|
|Dr. Teri Doolittle||Lake Forest Park||Washington|
|Erika Downie||Salisbury||New Hampshire|
|Jennifer Dreyfus||Takoma Park||Maryland|
|Helena Ellis||Durham||North Carolina|
|Bonnie Epstein||Teterboro||New Jersey|
|Patricia Everett||Johns Creek||Georgia|
|Patrick Everett||Johns Creek||Georgia|
|Susan Feinberg||West Dennis||Massachusets|
|Stephanie Festian||Grand Rapids||Michigan|
|Jill Fischer||Branchburg||New Jersey|
|Elena Flowers||San Francisco||California|
|Keitha Forbes||Jamaica||New York|
|Rebecca Freeman||Santa Ana||California|
|Miya Frick||San Francisco||California|
|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|
|Mariah Gill||Spearfish||South Dakota|
|Philip Goglas III||Silver Spring||Maryland|
|Fran Gomez Moore||Mahopac||New York|
|Connie Goodwin||Fort Wayne||Indiana|
|Lorie Goshin||Brooklyn||New York|
|Peter Gotfredson||La Jolla||California|
|Tracey Grant||Durham||North Carolina|
|Allison Gray||San Francisco||California|
|Marcia Grayson||San Antonio||Texas|
|M Jennifer Green||Bend||Oregon|
|Steven Grossman||La Jolla||California|
|Tara Haarlander||Chester Springs||Pennsylvania|
|Courtney Halle||Fort Myers||Florida|
|Gregory Halle||Fort Myers||Florida|
|Kelly Halle||Fort Myers||Florida|
|Mary Hander||Post Falls||Idaho|
|Paul Hander||Post Falls||Idaho|
|Lori Harper||South Jordan||Utah|
|Amie Hass||Cedar Rapids||Iowa|
|Jennifer Haviland||Peekskill||New York|
|Ann Marie Hebert||Redondo Beach||California|
|Melanie Hecker||Lighthouse Point||Florida|
|Margaret Hefner||St. Louis||Missouri|
|Lisa Helms Guba, RN||Annapolis||Maryland|
|Jane Herman||New York||New York|
|Leigh Ann Higa||Philadelphia||Pennsylvania|
|Judy Hoffman Bolton/td>||Smithsburg||Maryland|
|Marilyn Hoganson||St. Paul||Minnesota|
|Mary Houchin||Woody Creek||Colorado|
|Nancy Hutcheson||Virginia Beach||Virginia|
|Colleen Johnson||New Brighton||Minnesota|
|Lowell Johnson||New Brighton||Minnesota|
|Stef Jones||San Carlos||California|
|Emily Jordan||Columbia||South Carolina|
|Laird Kelly||New York||New York|
|Linda Kincaid||Derry||New Hampshire|
|Camron King||Elk Grove||California|
|Kevin Kinney||Saint Charles||Missouri|
|Steven Klein||Greensboro||North Carolina|
|Rebecca Knowles||Rochester||New York|
|Elena Kowalsky||Manhasset||New York|
|Mary D. Kracun||La Jolla||California|
|Joanne Kreindel||Manhattan Beach||California|
|Rebecca Kronk||McKees Rocks||Pennsylvania|
|Kristofor Langlais||Silver Spring||Maryland|
|Alice Lara||Salt Lake City||Utah|
|Mary Leblanc||West Hartford||Connecticut|
|Nancy Lee||North Richland Hills||Texas|
|Sharon Lentino||Mount Prospect||Illinois|
|Emanuel Loeb||Hialeah Gardens||Florida|
|Amy Lossie||Silver Spring||Maryland|
|Niki Lovick||San Francisco||California|
|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|
|Meredith Masiello||Commack||New York|
|Jeremy McAuley||Mooresville||North Carolina|
|Vickie McAuley||Mooresville||North Carolina|
|Wayne McAuley||Mooresville||North Carolina|
|Danielle Meeuws||New York||New York|
|Susan Meier||Corfu||New York|
|Laurie Middendorf||E. Bridgewater||Massachusetts|
|Samantha Miller||Sioux City||Iowa|
|Briana Mittleman||Durham||North Carolina|
|Lesley Morgan||Sparks||New York|
|Maria Morrison||Klamath Falls||Oregon|
|Kathleen Mott||Santa Rosa||California|
|O. Thomas Mueller||St. Petersburg||Florida|
|Loren Mumford||Greenville||North Carolina|
|Allison Ostrowski||Albany||New York|
|Carol Owen||Klamath Falls||Oregon|
|Renee Owen||Sioux City||Iowa|
|Lynn Pais||Ann Arbor||Michigan|
|Rona Pasch||White Bear Lake||Minnesota|
|Lisa Pedersen||Malad City||Idaho|
|Barbara Pereya||Morristown||New Jersey|
|Barbara Pfeiffer||Bayville||New Jersey|
|Michael Phillips||Raleigh||North Carolina|
|Stacey Pierce||Livonia||New York|
|Manop Pithukpakorn||Silver Spring||Maryland|
|Jennifer Pitre||Cherry Hill||New Jersey|
|Lori Prescott||San Antonio||Texas|
|Cindy Read||Farr West||Utah|
|Lara Reichman||San Francisco||California|
|Jose Reyna||San Benito||Texas|
|Ken Richmond||Fairfax Station||Virginia|
|Juanita Robinson||Silver Spring||Maryland|
|Nancy Rollinson||New Haven||Connecticut|
|Wildred Romero||Colorado Springs||Colorado|
|William Rose||North Egremont||Massachusetts|
|Nicole Rosenleaf Ritter||Bozeman||Montana|
|Mary Ellen Rowan||Laguna Beach||California|
|Scott Sadinsky||West Hartford||Connecticut|
|Mary Schaeffer||Chestnut Hill||Massachusetts|
|Stephen Schaeffer||State College||Pennsylvania|
|Barbara Schardt||Auburn||New York|
|Carol Schmidt||New Brighton||Pennsylvania|
|Marisa Schroeder||El Cajon||California|
|Jenn Schwab||East Greenwich||Rhode Islan|
|Lisa Schwartz||Washington||District of Columbia|
|ME Seigler||Sugar Land||Texas|
|Leighsa Sharoff||New York||New York|
|Jennie Simpson||Silver Spring||Maryland|
|Craig Skala||Downers Grover||Illinois|
|Robert Nathan Slotnick||Reno||Nevada|
|Matthew Smith||Chapel Hill||North Carolina|
|Phyllis Speiser||New York||New York|
|Erica Spiegel||New York||New York|
|Ida Spruill||Charleston||South Carolina|
|Mary Beth Steckr||Clemson||South Carolina|
|Heather Streeter||Essex Junction||Vermont|
|Dipanshu Sur||Kilkata||West Bengal|
|Susan Swenson||Palm Harbor||Florida|
|John Thomas||Falls Church||Viginia|
|N Thompson||Washington||District of Columbia|
|Sharon Tieskotter||Charles City||Iowa|
|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|
|Gregory Totero||Haverstraw||New York|
|Helen Travers||Miami Shores||Florida|
|Stuart Tsubota||Brockport||New York|
|Marcia Valbracht||Des Moines||Iowa|
|Toni Van Pelt||Amherst||New York|
|Danielle Wagner||Waterford Works||New Jersey|
|Lori Wallace||San Jose||California|
|Stacy Wanasek||West Bend||Wisconsin|
|Marilyn Wann||San Francisco||California|
|Ian Weeks||Peachtree City||Georgia|
|Katherine Welch||Ponte Vedra Beach||Florida|
|Robert West||Syracuse||New York|
|Sara Weinke||Charleston||South Carolina|
|Mara Wilber||New York||New York|
|Collin Wiles||Providence||Rhode Island|
|Julie Wilson||Santa Rosa||California|
|Kate Wilson||Missouri City||Texas|
|Sarah Witherington||Villa Park||Illinois|
|Pamela Yager||Turtle Lake||Wisconsin|
|Diane Zastrow/td>||San Bruno||California|
 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.
 78 Federal Register at 33162.
 78 Federal Register at 33163.
 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