JULIA KELLEY EBERT Genetic Information Non-Discrimination Act

Genetic Information in Employment Medical examinations  Pre-employment/Post-Offer  Fitness for duty  Request for accommodation  Return to work  FMLA medical certifications In the personnel file At the water cooler On Facebook Employer Reference

EEOC v. Burlington Railroad secretly tested employees for a rare genetic condition that causes carpal tunnel syndrome Doctors also screened for other medical conditions Employee refused testing- threatened with termination EEOC files genetic discrimination claim under ADA Burlington – test was means of determining whether repetitive-stress injuries were work-related EEOC argued tests were not job related Burlington agreed to stop requesting genetic samples and to stop punishing employees who refused Lawsuit settled

Disjointed State Regulations Hiring, firing, and terms, conditions, and privileges of employment- 34 states + D.C. Requesting genetic information or testing- 20 states Requiring genetic information or testing- 25 states Performing genetic testing- 16 states Obtaining genetic information or test results- 11 states

Genetic Information Nondiscrimination Act Title I covers group health insurance  amends ERISA, Public Health Services Act, I.R.C. HIPAA, Social Security Act Title II covers employment practices  Same penalties as Title VII and ADA  jury trial, compensatory damages, attorneys fees, punitive damages up to $300,000 upon a showing of malice or reckless indifference  Administered by the EEOC  Prohibits genetic discrimination  Protects genetic information

Prohibiting Genetic Discrimination Section 202 provides: (a) DISCRIMINATION BASED ON GENETIC INFORMATION.—It shall be an unlawful employment practice for an employer—  (1) to fail or refuse to hire, or to discharge, any employee, or otherwise to discriminate against any employee with respect to the compensation, terms, conditions, or privileges of employment of the employee, because of genetic information with respect to the employee; or  (2) to limit, segregate, or classify the employees of the employer in any way that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee as an employee, because of genetic information with respect to the employee.

Definitions “Genetic Information”  individual’s genetic tests  genetic tests of family members  family medical history  manifestation of a disease or disorder in family  request for or receipt by the individual or family members of genetic services  request for or participation in clinical research that includes genetic services  genetic information if a fetus - Not information about sex or age

Definitions “Genetic Tests”  tests to determine predisposition for cancer or Huntington’s disease  carrier screening to detect risk of conditions such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, or fragile X syndrome in future offspring  DNA testing for family relationships (i.e. paternity) - Not complete blood counts, cholesterol tests, liver-function tests, and tests for the presence of alcohol or illegal drugs

Definitions Family Members  anyone eligible for enrollment under a health plan as a dependent of an employee  a first, second, third or fourth degree relative,  a fetus or embryo  EEOC regs- dependents through marriage, birth, adoption, or placement for adoption

Protecting Genetic Information Acquiring Genetic Information- Letter of the Law Employers may not request, require, or purchase genetic information with respect to an employee or his or her family members Acquiring Genetic Information- Spirit of the Law EEOC Regs- Employers may violate GINA merely by engaging in activity that presents a “heightened risk” of acquiring genetic information.  impose duty to take affirmative steps not to acquire

Protecting Genetic Information Acquiring Genetic Information- Spirit of the Law What presents a “heightened risk”? internet searches likely to result in discovery of genetic information actively listening to third-party conversations searching employee’s personal effects making requests for information about an individual’s current health status in a way that is likely to result in a covered entity obtaining genetic information

Protecting Genetic Information Acquiring Genetic Information- Spirit of the Law Fitness for Duty Examinations  instruct the health care professional not to provide genetic information when responding to the request  warning is mandatory  discontinue using professional who provides genetic information after being instructed not to do so Requests for medical information  safe harbor language in final regulations  narrowly tailored request not likely to result in obtaining genetic information

Protecting Genetic Information Genetic Information is Confidential confidential medical record maintained in files separate from employment records treated in accordance with the ADA’s standards

Six Lawful Requests for Genetic Information Inadvertent requests genetic information Voluntary Wellness Programs Compliance with the FMLA, state leave, employer’s leave policy Commercial public document purchases Genetic monitoring of the biological effects of toxic substances in the workplace DNA analysis for law enforcement purposes in a forensic laboratory.

Inadvertent Requests a/k/a “Water Cooler Exception” narrowly construed by EEOC OKNOT OK Asking employee, “How are you?” Following up with probing questions Accepting subordinate’s Facebook friend request and inadvertently learning genetic information posted for all “friends” to see Friending subordinate to learn genetic information Receiving genetic information as overbroad response to narrowly tailored request Doing anything with intent to learn genetic information

Voluntary Wellness Programs Employer offers health or genetic services in connection with a voluntary wellness program  employee provides prior, knowing, voluntary, written authorization  reasonably likely to be understood by employee  describe information being requested  describe safeguards to protect against disclosure  employer receives only aggregate information for all employees participating in wellness program  only the employee or licensed health care professional or board certified genetic counselor receives the individual identifiable information

Genetic Monitoring Biological Effects of Toxic Substances in Workplace monitoring required by state or federal law prior, knowing, voluntary, written authorization  reasonably likely to be understood by the consenting employee  describe information to be obtained  describe restrictions on disclosure  describe risks employer cannot discriminate or retaliate against an employee who refuses to participate employer receives aggregate information employees receive monitoring results

DNA Analysis Law enforcement purposes Forensic laboratory Identify human remains Detect contamination

Lawful Disclosure of Genetic Information to an employee upon a written request, to an occupational or health researcher, in response to a court order, to a government official investigating a GINA complaint, to a public health agency for FMLA or state leave law purposes, or to a public health agency if the information concerns a contagious disease that presents an imminent hazard or life-threatening illness

Anti-Retaliation Provision Employers may not retaliate against employees for opposing an employment act or practice proscribed by the Act  making or participating in a charge of discrimination  assisting another in opposing a GINA violation or filing a charge  testifying, assisting, or participating in an investigation, proceeding, or hearing

Pamela Fink and MXenergy First GINA claim filed in charge with EEOC Genetic Test and family history showed that employee carried the BRCA2 gene and was at risk for breast cancer Preemptive double mastectomy followed Employment allegedly terminated approximately five months thereafter

EEOC GINA Charge Fiscal Year charges filed 56 resolutions 3 settlements 2 withdrawals with benefits 11 administrative closures 38 no reasonable cause findings 2 reasonable cause findings 1 successful conciliation 1 unsuccessful conciliation

Thank you!