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New privacy law aims to prevent misuse of genetic information

By David Middlebrook and Robert W. Rucker

The federal Genetic Information Nondiscrimination Act  (GINA) which took effect on March 21, 2009, is intended to protect the privacy of Americans. It relates to genetic information and to prevent “genetic discrimination” in health insurance and employment situations.

For years there have been growing fears that with advanced testing capabilities, insurance companies would not grant insurance to and employers would not hire people who had greater possibilities of developing disabling diseases based upon their genetic makeup or family history.

For instance, with genetic testing it is now possible to predict, or at least assess the probability, if an employee is likely to contract diabetes, heart disease, cancer or Alzheimer’s disease. In passing the new law, Congress said it was worried that these advances in genetic testing give rise to the potential misuse of the genetic information.

Misuse of information

It described a time in the early 20th Century when some states passed sterilization laws to prevent certain persons with genetic diseases from reproducing, that such laws deprived many people of their constitutional freedoms and were ultimately repealed. Congress also cited the more recent example of the Lawrence-Berkeley Lab case from 1998 where employees were given pre-employment blood and urine tests to determine, among other things, their probability for having sickle cell anemia.

Based upon these historical examples, the need to protect genetic information was found to be a matter of public interest. More importantly, Congress was concerned that if people were worried that having genetic testing might lead to being denied employment or insurance, they might be less likely to take advantage of the significant advances in testing and treatment. Having people afraid to get tested for genetic diseases and thus miss out on treatment opportunities are not in our best national interests.

The law says that it is an unlawful employment practice for an employer to request, require, or purchase genetic information from any employee, job applicant, or from a family member. “Genetic information” is obtained by genetic testing that includes an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detect genotypes, mutations, or chromosomal changes.

Routine testing that obtains such things as complete blood counts, cholesterol tests and liver-function tests are not considered to constitute genetic testing. Also, analysis of genetic information directly related to a disease that has already manifested itself may not be covered by the law.

Family members also protected

Under GINA, it is unlawful for an employer to discriminate in the hiring, firing, or terms, conditions, or privileges of employment based upon the genetic information of an employee, applicant, or one of their family members (“family member” means dependents and up to and including 4th degree relatives). However, GINA does not apply to employers with fewer than 15 employees.

There are also certain exceptions that may apply. The ones that are probably of most interest to a church employer include inadvertent requests or disclosures, requests related to leave sought under the Family Medical Leave Act (FMLA), and information obtained in public documents commercially and publicly available including newspapers, magazines, periodicals and books. But even in these exceptions, while it may have been lawful to obtain the information, it still cannot be used to discriminate.

Employers are now required to treat genetic information as part of confidential medical records and are supposed to keep such medical information under separate forms and files from other personnel records. Employers may disclose this information if asked by employee in writing, to certain health researchers under certain regulations, in response to a court order, to governmental agencies investigating GINA compliance, in association with certifying employee compliance with the FMLA or similar state laws, or to public health officials if the information concerns a contagious disease and notification is provided.

Violations of the law can be enforced by various governmental agencies and individuals who claim to be victims of genetic discrimination can also bring private lawsuits. Many churches may not have a lot of dealings with the genetic information of their employees and job applicants. The most likely way they would encounter it would be through health insurance documentation and related to disability and leave claims.

Maintain confidentiality

However, regardless of how the information is obtained, the church employer is responsible to maintain its confidentiality and not make use of it in a discriminatory way.

Churches should update employee manuals and personnel forms to make sure that it is clear that the church does not discriminate on the basis of genetic information and make sure there is a clear understanding of how employees or applicants can report suspicions of genetic discrimination.

Leaders should create procedures where if the church receives genetic information it is segregated from other more routine employee or applicant paperwork and kept in a secure location. It’s also important that there is a clear policy and understanding as to when such information can be released (such as pursuant to court order).

It’s necessary to make sure that the church is not asking for information that could be viewed as genetic information on job applications or in any other format. Leaders should not ask for genetic information when accessing leave requests and have some kind of standard request to medical professionals not to include genetic information when documenting medical conditions.

Church leaders also need to make sure that any employer-provided health or wellness plans comply with GINA.

Whether the church deals with these issues rarely or a lot, it still makes sense to be aware of the issue and have some policies and procedures in place.

David Middlebrook is a partner and Robert W. Rucker is an attorney of Anthony and Middlebrook, The Church Law Group, Grapevine, TX. www.churchlawgroup.com

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