NEW YORK (GenomeWeb News) – As it prepares to implement the parts of the Genetic Information Nondiscrimination Act that are applicable to employment discrimination, the Equal Employment Opportunity Commission has been taking comments from the public about its concerns and considerations regarding GINA.
The two-month comment phase at EEOC, which closes on May 1, is focused on GINA’s Title II, which deals with employers and genetic privacy.
One point of concern among those who have commented so far is that Title II should be kept separate from Title I, which deals with insurance and discrimination. Title II restricts employers from deliberately acquiring genetic information about employees and prohibits them from using it in making employment decisions. It also maintains that genetic information must be kept confidential and places strict limits on its disclosure.
Aside from the desire to have a firewall separating Title II from Title I, much of the discussion over Title II has focused on the importance of making sure that the terminology is not ambiguous, and that there are some exceptions for unintentional acquisition of genetic information.
Eve Hill, of the Burton Blatt Institute at Syracuse University, addressed the latter concern directly in a comment. BBI is worried that “medical records provided to employers will often contain genetic information and there are no provisions for medical professionals to prevent such disclosure,” Hill pointed out.
“Once an employer receives that information, it will be impossible to "’unring the bell’ and use of the information, although prohibited, will occur and be difficult to challenge,” she wrote.
Healthcare providers currently are not required to separate genetic health information from other types of medical information, and under the proposed regulations, every employer request could “violate the purposes of GINA, but will not be prohibited,” Hill explained.
She recommended a requirement for healthcare providers to remove or redact genetic information, and to require employers to specifically inform respondents that such information must be removed. An “independent reviewer” here also could review and remove or redact all genetic information from these records, Hill suggested.
While employers are expected to take some action to avoid receiving genetic information, they are likely to be hesitant to do so if it means modifying agency-drafter forms, such as those that comply with the Family Medical Leave Act, explained Lynn Esp of the Illinois Credit Union League.
“If an employer includes a paragraph that a healthcare provider should not disclose genetic information on the Certificate of Health Care Provider, will the change in the form result in a loss of protection?” Esp asked.
To help avoid such problems, Esp proposed that the Department of Labor incorporate the new EEOC changes on these certificate of health forms.
There could also be some regions between GINA and the Americans with Disabilities Act where people are left exposed, Hill suggested.
For example, in the case of individuals “at the middle stage of a progressive genetic disease," Hill explained, those patients may be unprotected. In the case of retinitis pigmentosa, a genetic disease, Hill said, people may be protected before symptoms present and after blindness, but if “mild symptoms” last for much of the person’s adult life, the patient will fall through the cracks between the two acts.
“It is important that the interface between GINA and the ADA be clarified and, if necessary, altered to address individuals with slow-progressing diseases who, like those with genetic indicators, often face discrimination,” Hill recommended.
Another concern about how employers may come into genetic information is the potential for a social slip, or incidental situation in which employers happen upon the information, Jennifer Warren, an unaffiliated commenter, noted.
Warren pointed out that access to genomic information is now available through a number of online services, and the technology is available for that information to be shared with family, friends, and others, and that there could be fuzzy areas where the intent of the delivery or acceptance of genetic information will be difficult to divine.
“Violations of GINA will be extremely difficult to prove within the existing evidentiary framework,” Warren explained, and the “regulations should not make the burden on individuals seeking recourse for ‘genism’ any more challenging that it already is.”
”It is important that the EEOC not just pass rules and regulations for implementation but also actively enforce non-discrimination laws,” she added.
The definition of what will count as genetic information is of particular importance to the Genetics and Public Policy Center at Johns Hopkins University, which noted in its comments that the key terms in the EEOC rule should have “strong and unambiguous definitions.”
The definition of a genetic test in Title II now does not include “an analysis of proteins or metabolites that does not detect genotypes, mutations, or chromosomal changes,” GPPC noted, adding that the EEOC also should specify the list of tests that it will cover.
GPPC advised that the rule should expand the definition of “genetic test” to include carrier screening, amniocentesis, newborn screening tests, pharmacogenetic tests, and DNA testing to detect markers associated with information about ancestry.
GPPC also proposed definitions for other terms that appear in the law, including “manifestation,” and “genetic services,” and it proposed clarifying language having to do with family history issues and exceptions for how employers may acquire genetic information, among others.
EEOC will continue to accept comments here through May 1.
Comments are available for review here.