What a Workplace May Do With Family Medical History

Answer first: family medical history is genetic information

The Genetic Information Nondiscrimination Act's employment title, and the regulation implementing it, define genetic information to include five things. An individual's genetic tests. The genetic tests of that individual's family members. The manifestation of disease or disorder in family members of the individual — which the regulation glosses, in the same sentence, as family medical history. An individual's request for or receipt of genetic services, or participation in clinical research that includes genetic services, by the individual or a family member. And the genetic information of a fetus carried by the individual or by a pregnant family member, and of any embryo legally held using an assisted reproductive technology.

So no genetic test needs to have happened for the statute to be engaged. A question about whether a parent had a condition is a question about genetic information as the regulation defines it.

The definition also states what it excludes: information about the sex or age of the individual, the sex or age of family members, or information about race or ethnicity that is not derived from a genetic test.

Family member is defined widely. It covers a person who is a dependent of the individual as a result of marriage, birth, adoption or placement for adoption, and it covers relatives out to the fourth degree — parents, siblings and children at the first degree; grandparents, grandchildren, uncles, aunts, nephews, nieces and half-siblings at the second; great-grandparents, great-grandchildren, great uncles and aunts and first cousins at the third; and great-great-grandparents, great-great-grandchildren and first cousins once removed at the fourth.

The statute's core prohibitions are the familiar pair. It is an unlawful employment practice for an employer to fail or refuse to hire, to discharge, or otherwise to discriminate against any employee with respect to compensation, terms, conditions or privileges of employment because of genetic information with respect to the employee; and to limit, segregate or classify employees in any way that would deprive or tend to deprive them of employment opportunities or otherwise adversely affect their status, because of genetic information.

The acquisition rule, and how broadly request is defined

Alongside the discrimination prohibition sits a separate one about obtaining the information at all. It is an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee or a family member of the employee, except in six enumerated situations.

The regulation restates that as a general prohibition and then defines the verb, which is where it becomes concrete. Request includes conducting an Internet search on an individual in a way that is likely to result in the covered entity obtaining genetic information; actively listening to third-party conversations or searching an individual's personal effects for the purpose of obtaining genetic information; and making requests for information about an individual's current health status in a way that is likely to result in the covered entity obtaining genetic information.

That last clause is the important one for ordinary workplaces, because it does not require anyone to have asked about relatives. A request about the employee's own current health status, framed in a way likely to produce family history in the answer, is inside the definition.

The inadvertence exception, and the paragraph that manufactures it

The first statutory exception covers the case where an employer inadvertently requests or requires family medical history of the employee or a family member. The regulation turns that into something an employer can act on rather than merely hope for.

It first narrows it. If a covered entity acquires genetic information in response to a lawful request for medical information, the acquisition will not generally be considered inadvertent unless the covered entity directs the individual or the health care provider from whom it requested medical information not to provide genetic information — in writing, or verbally where the entity does not typically make such requests in writing.

Then it supplies the language. If a covered entity uses language such as the following, the regulation says, any receipt of genetic information in response to the request for medical information will be deemed inadvertent. The quoted paragraph explains that GINA prohibits requesting or requiring genetic information except as specifically allowed, asks that no genetic information be provided in responding to the request, and lists what genetic information includes: family medical history, the results of an individual's or family member's genetic tests, the fact that an individual or family member sought or received genetic services, and genetic information of a fetus or of a lawfully held embryo.

This is a rare thing in a regulation — a safe harbor built out of a specific paragraph of text. It is worth knowing about from the other side of the desk, because it explains why a medical certification form may carry a notice telling a clinician not to include family history.

The regulation lists three settings where the documentation request itself is lawful: supporting a request for reasonable accommodation under federal, state or local law, where the disability or need is not obvious and the documentation is no more than sufficient; requesting medical information as required, authorized or permitted by law, such as leave under the Family and Medical Leave Act for the employee's own serious health condition or a return-to-work certification; and supporting a request for leave not governed by a leave law, so long as the documentation otherwise complies with the disability rules.

It also gives examples of genuinely inadvertent acquisition. A manager overhearing a conversation. A manager receiving the information during a casual conversation, including in response to an ordinary expression of concern — the regulation's illustrations are a general question such as how are you, or a question to someone whose family member was just diagnosed. Unsolicited receipt from a third party, such as an email from a co-worker. And learning it from a social media platform the manager was given permission to access.

But it draws the line where the conversation stops being casual. The exception does not apply where an employer follows up a question about a family member's general health with questions that are probing in nature, such as whether other family members have the condition, or whether the individual has been tested for it, because the covered entity should know that such questions are likely to result in the acquisition of genetic information.

The wellness exception, and the conditions attached to it

The second statutory exception covers health or genetic services offered by the employer, including such services offered as part of a wellness program. The statute conditions it on prior, knowing, voluntary and written authorization from the employee; on only the employee, or the family member receiving services, and the licensed health care professional or board certified genetic counsellor receiving individually identifiable results; and on that information being available only for purposes of the services and not disclosed to the employer except in aggregate terms that do not disclose the identity of specific employees.

The regulation elaborates each condition. The services must be reasonably designed to promote health or prevent disease, using the same formulation found in the disability rules — a reasonable chance of improving health or preventing disease, not overly burdensome, not a subterfuge, not highly suspect in method. It adds a specific disqualifier: a program is not reasonably designed if it imposes a penalty or disadvantage on an individual because a spouse's manifestation of disease or disorder prevents or inhibits the spouse from participating or from achieving a certain health outcome. Its own illustration is that an employer may not deny an employee an inducement for participation because the employee's spouse has a blood pressure, cholesterol level or blood glucose level the employer considers too high.

It also specifies the authorization form: written so the individual is reasonably likely to understand it, describing the type of genetic information that will be obtained and the general purposes for which it will be used, and describing the restrictions on disclosure.

On inducements, the regulation states a general bar with a carve-out. A covered entity may not offer an inducement, financial or in-kind, whether a reward or a penalty, for individuals to provide genetic information. But it may offer inducements for completion of health risk assessments that include questions about family medical history or other genetic information, provided the covered entity makes clear, in language reasonably likely to be understood, that the inducement will be made available whether or not the participant answers the questions regarding genetic information.

The regulation's two worked examples show the distinction. In the first, a hundred-question health risk assessment whose final twenty questions concern family medical history and other genetic information is offered with an inducement, and the instructions make clear that the inducement goes to all employees who respond to the first eighty questions whether or not the remaining twenty are answered. That does not violate the title. In the second, on the same facts, the instructions do not indicate which questions request genetic information, and the assessment does not otherwise make clear which questions must be answered to obtain the inducement. That does violate it.

Both examples use the same dollar amount, and it is an illustration inside a worked example rather than a limit. The paragraph that would carry an inducement limit, § 1635.8(b)(2)(iii), reads [Reserved] in the current text — the same posture as the corresponding paragraph in the disability regulation. No limit or percentage is asserted here.

Four more exceptions, and two rules that survive all of them

The statute's remaining exceptions are narrow and specific.

Family medical history requested to comply with the certification provisions of the Family and Medical Leave Act, or equivalent state family and medical leave requirements. The regulation extends that to a policy, even absent a leave law, that permits leave to care for a sick family member and requires all employees to provide information about the family member's health condition to substantiate the need for leave.

Documents that are commercially and publicly available. The statute names newspapers, magazines, periodicals and books, and excludes medical databases and court records. The regulation adds further exclusions: research databases available to scientists on a restricted basis; sources with limited access such as social networking sites requiring permission or group membership, unless access is routinely granted to all who request it; sources the entity sought out with the intent of obtaining genetic information; and media sources where the entity is likely to acquire genetic information, such as websites and discussion groups focused on genetic testing or genetic discrimination.

Genetic monitoring of the biological effects of toxic substances in the workplace, subject to written notice, authorization or a legal requirement, informing the individual of their own results, compliance with applicable monitoring regulations, and aggregate-only reporting to the employer. The regulation adds that a covered entity may not retaliate or otherwise discriminate against an individual for refusing to participate in monitoring that is not required by law.

And DNA analysis for law enforcement purposes by a forensic laboratory or for human remains identification, limited to analysis of DNA identification markers for quality control to detect sample contamination.

Two rules survive every exception. The statute provides that where any of the six exceptions applies, the information may not be used in violation of the discrimination prohibitions or treated or disclosed in a manner that violates the Act's confidentiality provision.

And the regulation adds two protections specific to wellness arrangements. A covered entity may not condition participation, or provide any inducement to an employee or the employee's spouse or other covered dependent, in exchange for an agreement permitting the sale, exchange, sharing, transfer or other disclosure of genetic information, or otherwise waiving the confidentiality protections. And it may not deny access to health insurance or any package of health insurance benefits to an employee or the employee's spouse or other covered dependent, or retaliate against an employee, because a spouse refused to provide information about their own manifestation of disease or disorder to an employer-sponsored wellness program.

Where this leaves a reader

The structure is easy to hold. Family history is genetic information. Asking for it is separately prohibited from acting on it. Six exceptions exist, most of them narrow, and the two that matter in an ordinary workplace are inadvertence and the wellness arrangement.

The inadvertence exception is what explains the notice paragraph on a medical certification form, and knowing that it is a regulation-supplied safe harbor rather than boilerplate is useful context when one appears.

The wellness exception is where a weight or metabolic program can touch this rulebook, because health risk assessments routinely ask about relatives. The regulation's rule there is not that such questions are forbidden. It is that the reward must be available whether or not they are answered, and that the assessment must make clear which questions those are.

The regulation also names one arrangement that is expressly permitted: financial inducements to encourage individuals who have voluntarily provided family medical history indicating increased future risk to participate in disease management or healthy-lifestyle programs, or to meet particular health goals — provided the same programs are also offered to individuals with current health conditions or whose lifestyle choices put them at increased risk. Its own illustration is a program encouraging weight loss and a healthy lifestyle.

None of this tells any reader that a question they were asked was unlawful, or that a complaint would succeed. Those are determinations on a specific record, and none is asserted or predicted here.