Civil Law in the United States (USA) and Genetic Information Privacy Litigation

Introduction

Genetic information privacy litigation concerns civil lawsuits arising from the unauthorized collection, use, disclosure, storage, testing, sharing, or discriminatory use of a person's genetic information or biological samples.

Genetic information is unusually sensitive because DNA can reveal not only information about an individual but also information about biological relatives, ancestry, disease predispositions, and family relationships. U.S. law therefore protects genetic information through a patchwork of federal statutes, state privacy laws, employment-discrimination statutes, constitutional privacy principles, common-law torts, and contractual/confidentiality doctrines.

The most important federal statute is the Genetic Information Nondiscrimination Act of 2008 (GINA). Title II prohibits covered employers from using genetic information in employment decisions, restricts employers from requesting or purchasing such information except in narrow circumstances, imposes confidentiality obligations, and prohibits retaliation. (EEOC)

However, GINA is not a comprehensive genetic-privacy statute. For example, it does not create a general federal private cause of action against every company that obtains or sells DNA information. Consequently, litigation may instead arise under state genetic-privacy statutes, constitutional privacy doctrines, intrusion upon seclusion, consumer-protection laws, breach of contract, negligence, or other causes of action.

1. Meaning of Genetic Information Privacy

Genetic information privacy refers to an individual's legal interest in controlling information derived from:

DNA;

RNA;

chromosomes;

genetic tests;

biological samples;

family medical history;

genetic disease predisposition;

ancestry information;

genetic relationships;

genomic sequencing;

genetic research.

Under GINA, "genetic information" includes information about an individual's genetic tests, family members' genetic tests, family medical history, requests for or receipt of genetic services, and certain information concerning fetuses or embryos. (EEOC)

Example

Suppose an employer learns that an employee's parent has Huntington's disease.

If the employer uses that information to decide:

"This employee may eventually develop the disease, so we will not promote him."

that can raise a serious GINA issue.

2. Why Genetic Information Receives Special Protection

Genetic information is different from ordinary personal information because it can reveal:

A. Future health risks

DNA may indicate predispositions to particular diseases.

B. Family information

A person's genetic information can reveal information concerning parents, siblings, children and other relatives.

C. Information unknown to the individual

Genetic testing can sometimes reveal information the person did not previously know.

D. Permanent characteristics

Unlike a password, DNA generally cannot simply be changed after a data breach.

E. Identification

DNA can be used to identify an individual or establish biological relationships.

F. Ancestry and family relationships

Genetic databases can reveal ancestry and familial connections.

This explains why courts have repeatedly described genetic and medical information as occupying an especially sensitive area of privacy. In Norman-Bloodsaw, for example, the Ninth Circuit emphasized the extraordinary privacy implications of unauthorized testing for intimate medical and genetic information. (Biotech Law LSU)

3. Major Sources of U.S. Genetic Privacy Law

There is no single comprehensive U.S. genetic-privacy code.

Instead, litigation can involve several bodies of law.

3.1 Genetic Information Nondiscrimination Act

GINA has two major components.

Title I

Addresses genetic discrimination in health insurance.

Title II

Addresses employment.

Title II prohibits covered employers from:

discriminating based on genetic information;

requesting genetic information;

requiring genetic information;

purchasing genetic information;

improperly disclosing genetic information.

It also provides protection against retaliation. (EEOC)

4. Who Is Covered by GINA Title II?

Generally, Title II applies to:

private employers with 15 or more employees;

employment agencies;

labor organizations;

joint labor-management training programs;

federal employers and other covered entities.

The statute also interacts with state laws that may provide greater protection. (EEOC)

5. What Counts as Genetic Information?

GINA's definition is broader than simply:

"DNA showing whether a person has a disease."

It can include:

1. Individual genetic tests

For example, a test identifying a genetic variant.

2. Family-member genetic tests

Information about genetic testing of relatives.

3. Family medical history

For example:

"My mother and two sisters have Huntington's disease."

4. Genetic services

Information concerning an individual's or family member's receipt or request for genetic services.

5. Certain fetal or embryo information

GINA also covers specified genetic information concerning fetuses and embryos in assisted reproductive contexts. (EEOC)

6. Genetic Privacy vs Genetic Discrimination

These concepts overlap but are not identical.

Genetic privacy

Concerns:

Who can obtain, use, retain, or disclose genetic information?

Genetic discrimination

Concerns:

Whether genetic information is used to disadvantage an individual.

For example:

Privacy violation:

An employer secretly obtains an employee's DNA.

Discrimination:

The employer discovers a genetic predisposition and refuses to promote the employee because of it.

A single factual situation can potentially involve both.

7. At Least 6 Important U.S. Case Laws

Because genetic-privacy litigation is relatively specialized, some of the most significant cases arise under GINA, constitutional privacy principles, employment law, and state genetic-information statutes rather than under one unified federal genetic-privacy tort.

Case 1: Norman-Bloodsaw v. Lawrence Berkeley Laboratory

135 F.3d 1260 (9th Cir. 1998)

Facts

Employees of Lawrence Berkeley Laboratory underwent employment-related medical examinations.

The plaintiffs alleged that their blood and urine samples were used, without their knowledge or consent, to test for highly private conditions including:

sickle-cell trait;

syphilis;

pregnancy.

They argued that the unauthorized testing violated privacy rights and employment-discrimination laws.

Issue

Could employees assert privacy claims when their biological samples were used for undisclosed testing?

Holding

The Ninth Circuit allowed the federal and state privacy claims to proceed and rejected the notion that general consent to a medical examination necessarily authorized additional testing for highly sensitive conditions.

The court characterized unauthorized testing for previously unrevealed medical information as a particularly serious privacy intrusion. (Biotech Law LSU)

Importance

This is one of the most important U.S. cases concerning genetic privacy.

It establishes the principle that:

Consent to provide a biological sample does not necessarily equal consent to every possible genetic or medical test.

That principle has enormous importance for modern:

DNA testing;

biobanks;

direct-to-consumer genetic testing;

genetic research;

employer testing;

genomic databases.

8. Case 2: Lowe v. Atlas Logistics Group Retail Services (Atlanta), LLC

102 F. Supp. 3d 1360 (N.D. Ga. 2015)

This is commonly known as the "devious defecator" GINA case.

Facts

An employee repeatedly defecated inside an employer's warehouse.

The employer attempted to identify the person responsible.

Atlas required certain employees, including Jack Lowe and Dennis Reynolds, to provide cheek swabs.

The company conducted forensic DNA testing to compare the employees' DNA with DNA obtained from the biological material.

The plaintiffs were not matches.

They nevertheless brought claims under GINA.

Issue

Did forensic DNA analysis used to identify an employee—not to determine disease risk—constitute genetic information under GINA?

Holding

The district court interpreted GINA broadly and concluded that the forensic DNA analysis fell within the statutory definition of genetic testing and genetic information.

The court focused on the statutory language concerning analysis of DNA and rejected the argument that GINA should be limited only to tests revealing disease predisposition. (PubMed Central (PMC))

Importance

Lowe is extremely significant.

It demonstrates that:

GINA's protection is not necessarily limited to genetic information about disease.

The case is especially relevant to:

forensic DNA;

employee DNA testing;

workplace biometrics;

genetic identification;

employer possession of biological samples.

It also illustrates how broadly the statutory definition can operate.

9. Case 3: Poore v. Peterbilt of Bristol, LLC

852 F. Supp. 2d 727 (W.D. Va. 2012)

Facts

Mark Poore was an employee of Peterbilt.

He completed a health-insurance questionnaire concerning family medical conditions and disclosed information concerning his wife's multiple sclerosis.

He subsequently alleged that his employment was terminated because of age and genetic information.

Issue

Did the information concerning his wife's medical condition constitute protected genetic information under GINA?

Holding

The federal district court dismissed the GINA claim.

The court concluded that the allegations did not sufficiently establish protected genetic information within GINA's statutory framework. The case illustrates that not every medical condition or family-health fact automatically creates a viable GINA claim. (Studicata)

Importance

Poore is useful because it illustrates the opposite side of genetic-privacy litigation.

A plaintiff must establish that the information falls within the statute's definition.

Thus:

"Medical information" and "genetic information" are related but legally distinct concepts.

10. Case 4: Kanuszewski v. Michigan Department of Health and Human Services

Federal litigation concerning newborn blood samples

Facts

Michigan collected blood samples from newborn children through its newborn-screening program.

The plaintiffs challenged the state's continued possession and use of the children's blood samples for purposes beyond the initial screening, alleging that the samples were retained without adequate informed parental consent.

Legal Issue

Could continued government possession and use of biological samples raise constitutional privacy and Fourth Amendment concerns?

Court's Analysis

Federal litigation recognized significant constitutional concerns surrounding the government's continued, nonconsensual retention of newborn blood samples and genetic data beyond the original screening purpose.

The court considered the continued retention an ongoing injury and addressed requests for injunctive relief. (Justia Law)

Importance

Kanuszewski is particularly important for modern genetic privacy because it moves the analysis beyond:

"Who performed the test?"

to:

"How long may government retain and use the biological sample after the original purpose has ended?"

This is central to modern biobanking litigation.

11. Case 5: In re Lakisha M.

Illinois Supreme Court, 2008

Facts

The case involved the collection of DNA through a buccal swab from a juvenile and the constitutionality of Illinois' DNA-indexing statute.

The individual challenged the collection of genetic material under Illinois constitutional privacy principles.

Issue

Did compulsory DNA collection violate the state constitutional right to privacy?

Holding

The Illinois Supreme Court upheld the DNA-indexing system under the circumstances.

The court considered:

the physical intrusion of the buccal swab;

the individual's diminished privacy expectation;

the minimal nature of the physical intrusion;

limitations on dissemination of genetic information. (Justia Law)

Importance

The case demonstrates that genetic privacy is not absolute.

Courts often balance:

Individual genetic privacy

against

governmental interests in identification, public safety, or law enforcement.

12. Case 6: People v. Goldman

2020 New York appellate decision

Facts

The case involved the collection and analysis of biological material containing genetic information.

The court's opinion discussed the extraordinarily personal nature of genetic material and the breadth of information that DNA can reveal.

Importance

The case illustrates an important modern judicial concern:

A biological sample is not merely a physical object—it contains potentially extensive information about a person's identity, health, ancestry, and relatives.

The opinion relied upon the reasoning in Norman-Bloodsaw concerning the heightened privacy significance of genetic information. (New York Courts)

13. Case 7: Dinerstein v. Google, LLC

2023–2024 federal appellate litigation

Facts

Patients challenged the sharing of electronic health-record information between a medical institution and Google in connection with developing health-care artificial intelligence.

The dispute concerned whether patient information could be shared for technological and research purposes without violating privacy rights.

Holding/Outcome

The federal appellate litigation rejected the plaintiffs' claims under the particular legal theories and factual allegations presented.

Importance for Genetic Privacy

Although Dinerstein was principally an electronic-health-information case rather than a pure DNA case, it is highly relevant to modern genetic privacy.

Genomic information increasingly forms part of electronic health records.

The case illustrates a critical future issue:

Can health and genetic data be transferred to technology companies for AI development without violating patients' privacy rights?

The litigation has been discussed specifically in the context of patient privacy and medical AI. (JAMA Network)

14. Case 8: Stengart v. Loving Care Agency, Inc.

201 N.J. 300, 990 A.2d 650 (2010)

This is not a genetic-information case specifically, but it is an important private-sector privacy precedent that helps explain how courts approach sensitive personal information.

Facts

An employee used a personal, password-protected email account through a company laptop.

The employer's forensic examination of the laptop recovered personal communications with the employee's attorney.

Holding

The New Jersey Supreme Court held that the employee could have a reasonable expectation of privacy in the communications despite using company equipment.

Importance

The case illustrates a broader private-law principle:

The fact that information passes through an employer's technology does not automatically eliminate every reasonable privacy interest.

That reasoning can become relevant to future genetic-data disputes involving:

employer health systems;

wellness programs;

wearable devices;

genetic testing;

workplace databases.

The court relied upon the common-law tort of intrusion upon seclusion in analyzing the employee's privacy interest. (Justia Law)

15. Major Principles Derived from the Cases

16. Elements of a GINA Employment Claim

A typical GINA Title II claim may involve establishing that:

1. Defendant is covered

For example, the defendant is a covered employer.

2. Protected genetic information exists

The information falls within GINA's statutory definition.

3. Employer acquired, used, disclosed, or relied upon it improperly

Examples include:

requesting family medical history;

requiring genetic testing;

purchasing genetic data;

using genetic information in hiring.

4. Employment consequences occurred

For example:

termination;

failure to hire;

demotion;

compensation decision;

denial of promotion.

5. Causation

The plaintiff must connect the prohibited genetic-information conduct to the legally actionable violation.

17. Employer Prohibition on Acquisition

One of GINA's distinctive characteristics is that it does not merely prohibit discrimination.

It also restricts acquisition.

An employer generally may not:

request, require, or purchase genetic information.

There are narrow statutory exceptions, including certain inadvertent acquisitions, voluntary wellness/genetic services, specified leave-related family medical information, publicly available sources, certain genetic monitoring, and limited forensic-laboratory circumstances. (EEOC)

18. Genetic Information and Internet Searches

An especially modern issue is employer internet searching.

The EEOC regulations explain that a "request" can include conducting an Internet search in a manner likely to result in the employer obtaining genetic information. (EEOC)

Example

Suppose an employer searches an employee's social-media profile and discovers:

"My father was diagnosed with Huntington's disease."

If the employer deliberately sought that family medical information, the circumstances could create GINA concerns.

This becomes increasingly important with:

social-media screening;

AI recruitment;

automated background checks;

data brokers;

public genetic databases.

19. Confidentiality Obligations

GINA requires covered employers possessing genetic information to treat it as confidential medical information.

Generally, genetic information must be:

maintained separately from ordinary personnel records;

kept confidential;

disclosed only in legally permitted circumstances.

The EEOC specifically explains that genetic information in writing generally must be maintained separately in confidential medical files. (EEOC)

20. Genetic Privacy and Common-Law Intrusion Upon Seclusion

Even where GINA does not apply, a plaintiff may potentially consider a common-law privacy theory such as intrusion upon seclusion, depending on state law.

The general concept is:

Intentional intrusion into another person's private affairs that would be highly offensive to a reasonable person may create liability.

Norman-Bloodsaw and Stengart demonstrate how courts can analyze highly personal information through privacy principles. (Biotech Law LSU)

21. State Genetic Privacy Laws

State law is extremely important.

For example, Illinois has statutory protections concerning genetic testing and genetic information.

The Illinois Genetic Information Privacy Act provides that genetic testing and information derived from genetic testing are confidential and privileged, subject to statutory exceptions. It also restricts admissibility and discovery in specified circumstances. (Illinois General Assembly)

State laws can therefore provide protections beyond federal GINA.

Other states have enacted legislation concerning:

genetic testing;

genetic discrimination;

DNA databases;

consumer genetic testing;

biometric/genetic information;

medical privacy.

22. Consumer Genetic Testing Litigation

Direct-to-consumer companies create a major new area of civil litigation.

A customer may provide DNA to a company for:

ancestry testing;

health information;

genealogy;

family matching.

The company may then possess:

raw genetic data;

genetic profiles;

biological samples;

family relationships;

ancestry information.

Potential disputes include:

Contract

What did the company's terms promise?

Consent

Did the customer consent to secondary uses?

Privacy

Was data shared with third parties?

Negligence

Did inadequate security cause a genetic-data breach?

Consumer protection

Were privacy representations misleading?

Unjust enrichment

Did the company profit from information it allegedly obtained or used improperly?

23. Genetic Data Breaches

A genetic-data breach is particularly serious.

Suppose a company stores:

5 million DNA profiles.

Hackers obtain them.

Potential civil claims could include:

negligence;

breach of contract;

breach of implied contract;

invasion of privacy;

state consumer-protection statutes;

state genetic-information statutes;

unjust enrichment.

A major litigation question is often standing:

Has the plaintiff suffered a sufficiently concrete injury merely from exposure or theft of genetic data?

This can become complicated because DNA cannot simply be replaced like a credit-card number.

24. Genetic Information and AI

Artificial intelligence creates new genetic-privacy problems.

An AI system may process:

genomic sequences;

medical records;

family histories;

genetic risk scores;

phenotype information.

Potential litigation may concern:

Unauthorized AI training

Was genetic data used to train an AI model without proper authorization?

Re-identification

Can supposedly de-identified genomic information be linked back to a person?

Automated discrimination

Did an AI system use genetic information in employment or insurance decisions?

Data retention

How long can the company retain genomic data?

Secondary use

Can information collected for healthcare be used for commercial AI development?

The reasoning in Dinerstein demonstrates why the relationship between medical data, private companies, and AI is becoming an important privacy-law question. (JAMA Network)

25. Genetic Information and Employment

A particularly important scenario is:

Employer obtains an employee's genetic information → AI hiring system processes it → employee is rejected.

Possible legal theories may include:

GINA;

state genetic-discrimination law;

ADA, depending on the facts;

state privacy law;

negligence;

consumer-protection law.

GINA expressly prohibits using genetic information in employment decisions, including hiring, firing, compensation, advancement, and other terms and conditions of employment. (EEOC)

26. Genetic Privacy and Insurance

GINA Title I addresses genetic discrimination in health insurance.

However, GINA does not provide a universal prohibition against every form of genetic discrimination in every insurance market.

Therefore, litigation may also involve:

state insurance law;

ACA protections;

disability law;

consumer-protection law;

contractual claims.

This is an important limitation when describing GINA as a "genetic privacy law."

27. Genetic Information and Law Enforcement

Genetic privacy becomes especially complicated when government authorities possess DNA.

Potential issues include:

DNA collection;

DNA databases;

familial searching;

retention after acquittal;

use of biological samples for secondary purposes;

genetic genealogy;

Fourth Amendment searches.

In re Lakisha M. demonstrates that courts can uphold DNA collection where legitimate government interests and statutory safeguards outweigh the privacy intrusion. (Justia Law)

By contrast, Norman-Bloodsaw emphasizes the importance of informed consent and the sensitivity of unauthorized genetic testing. (Biotech Law LSU)

28. Remedies in Genetic Privacy Litigation

Depending on the cause of action and jurisdiction, remedies may include:

Compensatory damages

For actual economic or non-economic harm.

Emotional-distress damages

Potentially available under applicable privacy/tort statutes.

Punitive damages

Possible in appropriate cases where authorized by law and sufficiently egregious conduct is shown.

Injunction

Preventing continued collection, use or disclosure.

Deletion/destruction

A court may potentially order appropriate disposition of unlawfully retained information where authorized.

Attorneys' fees

Available under certain statutes.

Reinstatement/back pay

Particularly relevant to employment discrimination under GINA.

The EEOC explains that GINA Title II incorporates remedies similar to Title VII, including reinstatement, hiring, promotion, back pay, injunctive relief, compensatory and punitive damages, and attorney fees, subject to applicable limitations. (EEOC)

29. Defenses in Genetic Privacy Litigation

Defendants commonly may argue:

1. No protected genetic information

The information does not fall within the governing statute.

2. Consent

The individual expressly or impliedly consented.

3. Statutory exception

The collection fell within an exception.

4. No employment discrimination

The challenged employment decision was unrelated to genetic information.

5. No reasonable expectation of privacy

Particularly in constitutional or common-law privacy claims.

6. Governmental authority

DNA collection was authorized by law.

7. Lack of standing

The plaintiff cannot establish a legally cognizable injury.

8. Statute of limitations

The claim was filed too late.

9. Preemption

A defendant may argue that another statutory regime controls the claim.

30. Important Distinction: GINA Is Not a General Genetic-Privacy Act

This is one of the most important examination points.

GINA does not mean:

"Every unauthorized disclosure of DNA in America automatically violates federal law."

Instead, GINA has a defined scope.

It primarily addresses:

Genetic discrimination in health insurance and employment + restrictions on genetic-information acquisition/use/disclosure in specified contexts.

For broader privacy disputes, plaintiffs may need to rely on:

state genetic-information statutes;

constitutional privacy rights;

common-law privacy;

breach of contract;

negligence;

consumer-protection statutes;

other sector-specific laws.

The EEOC expressly notes that state and local laws providing equal or greater protection can continue to apply. (EEOC)

31. Genetic Privacy Litigation — Typical Process

Step 1 — Identify the genetic information

Determine exactly what was collected:

DNA;

genetic test;

family medical history;

sequencing data;

biological sample.

Step 2 — Identify the defendant

Possible defendants include:

employer;

healthcare provider;

genetic-testing company;

data broker;

government agency;

insurer;

technology company.

Step 3 — Identify applicable law

Potential sources include:

GINA;

state genetic privacy law;

constitutional law;

common-law privacy;

contract;

negligence;

consumer-protection law.

Step 4 — Establish acquisition/use/disclosure

Determine:

Who obtained the information?

How?

For what purpose?

Was consent obtained?

Step 5 — Establish injury

Possible injuries include:

discrimination;

unauthorized disclosure;

privacy invasion;

emotional distress;

financial loss;

loss of control over sensitive information.

Step 6 — Seek remedy

Potential relief:

damages;

injunction;

deletion;

reinstatement;

attorney fees;

statutory penalties.

32. Comparative Table

33. Major Legal Trends

Trend 1 — From testing to data retention

Courts increasingly have to consider not just:

"Was DNA collected?"

but:

"What happened to the DNA afterward?"

Kanuszewski is particularly relevant to this issue. (Justia Law)

Trend 2 — From disease information to identification information

Lowe demonstrates that genetic information can have significance even when it does not reveal disease risk. (PubMed Central (PMC))

Trend 3 — From physical samples to digital genomic data

Modern litigation increasingly concerns:

databases;

cloud storage;

genomic sequencing;

AI;

data analytics.

Trend 4 — Genetic privacy becomes family privacy

Because DNA reveals information about biological relatives, a person's genetic-data decision can potentially affect people who never provided a sample themselves.

Trend 5 — AI increases re-identification risks

A sufficiently sophisticated system may combine:

genomic data + public records + genealogy + medical data

to identify individuals.

This creates difficult questions about:

consent;

anonymity;

secondary use;

security;

ownership;

fiduciary responsibility.

34. Overall Legal Framework

The emerging U.S. model can be represented as:

Genetic sample/data

↓

Collection

↓

Consent / authorization

↓

Testing / analysis

↓

Storage

↓

Use

↓

Disclosure / transfer

↓

Discrimination or privacy injury

↓

Civil litigation

The legal question can arise at any point in this chain.

35. Conclusion

Genetic information privacy litigation in the United States is a rapidly developing area of civil law. Unlike some jurisdictions that use a single comprehensive data-protection regime, the United States uses a sectoral and state-based approach.

The principal federal protection is GINA, particularly Title II for employment. It prohibits covered employers from using genetic information in employment decisions, generally prohibits requesting or purchasing genetic information, imposes confidentiality requirements, and protects against retaliation. (EEOC)

The case law demonstrates several fundamental principles:

Norman-Bloodsaw — unauthorized genetic and medical testing can constitute a serious privacy invasion. (Biotech Law LSU)

Lowe — GINA can extend to forensic DNA testing even when the testing is not designed to determine disease susceptibility. (PubMed Central (PMC))

Poore — not every medical or family-health fact automatically qualifies as protected genetic information. (Studicata)

Kanuszewski — continued government retention of biological samples can create serious constitutional privacy concerns. (Justia Law)

In re Lakisha M. — genetic privacy can be balanced against legitimate governmental identification interests. (Justia Law)

People v. Goldman — courts recognize that DNA contains an extraordinarily broad collection of personal and familial information. (New York Courts)

Dinerstein — modern medical-data sharing with technology companies demonstrates the growing intersection between privacy, AI, healthcare, and potentially genomic information. (JAMA Network)

The central principle is therefore:

Genetic information is not merely another category of personal data; because it can reveal highly intimate, permanent, and familial information, U.S. civil law increasingly treats its collection, use, disclosure, and retention as matters requiring heightened legal scrutiny.

At the same time, there is no single universal federal genetic-privacy cause of action. The applicable claim depends heavily on the defendant, purpose of collection, type of genetic information, consent, jurisdiction, and applicable federal or state law.

This is an academic overview of U.S. civil law and is not individualized legal advice.