Genetic Privacy

South Carolina's Genetic Information Privacy Chapter: S.C. Code 38-93 and Its Stacked Remedies

Key Takeaways

  • Chapter 93, "Privacy of Genetic Information," was added by 1998 Act No. 369 and rewritten by 2010 Act No. 217, Section 14, effective June 7, 2010
  • Section 38-93-20 limits the chapter's application to health insurance coverage, but Sections 38-93-40 and 38-93-50 are phrased generally, and the chapter does not say how those provisions fit together
  • A health insurance issuer may not request or require a genetic test, or request, require or purchase genetic information for underwriting, subject to a research exception and manifested-disease carve-outs
  • Section 38-93-90 makes a single violation an unfair trade practice under Title 38 and Section 39-5-20, and also gives an injured individual equitable relief, actual damages and prevailing-party fees

An Insurance Chapter With Broader Language

South Carolina's statute sits in the Insurance title, at Chapter 93 of Title 38, headed "Privacy of Genetic Information." Section 38-93-20 sets its reach: it "applies to health insurance coverage offered in connection with an individual health plan, a group health plan, or a health benefit plan that is delivered, issued for delivery, or renewed in this State," and producers, agencies and insurance support organizations are subject to it to the extent of their participation in issuing or renewing coverage.

Two sections do not read as if confined that way. Section 38-93-40(A) opens with "All genetic information obtained before or after the effective date of this chapter," and Section 38-93-50 begins "It is unlawful to perform a genetic test on an individual without first obtaining specific informed consent." Neither names an insurer. The definition of "individual" in 38-93-10(7), though, is coverage-based: an insured, enrollee, covered dependent, participant, beneficiary, eligible employee or applicant for coverage. The chapter does not say how far the general sentences extend beyond Section 38-93-20, and no court decision reading them was found.

Life insurance is outside the coverage language, which speaks of health insurance coverage throughout. The definitions of coverage and issuer are borrowed from Sections 38-71-670 and 38-71-840.

How the Chapter Came to Read This Way

History notes in the code tell a layered story. The chapter was added by 1998 Act No. 369. The 2015 edition of the code carries an editor's note that, under 2002 Act No. 228, Section 15, the chapter "ceased to be of any force or effect after February 28, 2008." Every current section now cites 2010 Act No. 217, Section 14, effective June 7, 2010, and earlier editions carry editor's notes listing the former section numbers.

The renumbering matters for anyone comparing older citations. In the 2008 edition, consent to testing was at 38-93-40 and remedies at 38-93-60; today those are 38-93-50 and 38-93-90. The issuer-specific limits now at Sections 38-93-60 and 38-93-70, on requesting tests and on collecting genetic information, have no counterpart among the six sections of that 2008 edition.

Informed Consent for Genetic Testing

Section 38-93-50 requires "specific informed consent" from the individual or a person legally authorized to consent, unless the test falls into one of five categories:

  • By or for a law enforcement agency in a criminal investigation, or for the State DNA Database
  • For identifying a person or a dead body
  • To establish paternity under Section 63-17-30
  • Under a statute or court order specifically requiring the test
  • For diagnosis or treatment, when performed by a clinical laboratory on referral from the treating physician or another laboratory

The laboratory exception does not remove the consent duty altogether. It states that nothing in that item waives "the requirement that the treating physician obtain specific informed consent." The statute does not define informed consent or prescribe a form.

Limits on Insurers

Section 38-93-30(A) restricts a health insurance issuer, when issuing, renewing or reissuing coverage, from acting on genetic information about an individual or family member or on a request for genetic services. The barred actions are terminating, restricting or conditioning coverage or restricting the sale, cancelling or refusing to renew, excluding the person or setting eligibility rules, imposing a waiting period or preexisting condition exclusion, requiring a rider, and adjusting premium or contribution amounts.

Subsection (B) repeats the premium bar for groups, then permits an increase based on "the manifestation of a disease or disorder" in an enrolled individual, while forbidding use of that manifestation "as genetic information about other group members." Subsection (C) reaches intermediaries directly: "discrimination must not be made in the fees or commissions of a producer or agency" on the basis of an individual's genetic information.

Sections 38-93-60 and 38-93-70 then address collection. An issuer may not request or require an individual or family member to undergo a genetic test, though a treating health care professional may. Section 38-93-60(B) allows a request, never a requirement, in research that complies with 45 CFR Part 46, when the issuer tells each person that compliance is voluntary and has no effect on coverage or premium, uses nothing for underwriting, and notifies the federal secretary in writing. Section 38-93-70 bars requesting, requiring or purchasing genetic information for underwriting purposes or before enrollment, with an allowance for genetic information obtained incidentally to other information.

Section 38-93-80 lists what the chapter does not preclude: rules for individual coverage based on a manifestation of disease in the individual or a covered family member, premium adjustments on that basis, preexisting condition exclusions as otherwise permitted by law, and use of test results for a payment determination, limited to the minimum necessary information.

Disclosure

Under Section 38-93-40(A), genetic information "must not be disclosed to a third party in a manner that allows identification of the individual tested" without written informed consent. Six exceptions follow:

  • A criminal or death investigation, criminal or judicial proceeding, inquest, child fatality review, or the State DNA Database
  • Paternity under Section 63-17-30
  • An order of a court of competent jurisdiction specifically ordering disclosure of the genetic information
  • A deceased individual's information, where it "will assist in medical diagnosis of blood relatives of the decedent"
  • Identification of a person or a dead body by law enforcement or another authorized agency
  • Disclosure specifically authorized or required by a state or federal statute

Subsection (B) closes a route that consent might otherwise open: a health insurance issuer may not require consent to disclose genetic information to the issuer "as a condition for obtaining health insurance coverage."

Remedies That Stack

Section 38-93-90 assembles four sets of consequences, and subsection (C) adds that they are in addition to those of federal law, naming the Genetic Information Nondiscrimination Act.

LayerTextWhat it adds
DepartmentA single violation is an unfair trade practice under Title 38, Chapter 57, subject to Section 38-2-10, § 38-93-90(A)Section 38-2-10 fines: up to $15,000 for insurers, pharmacy benefits managers and health maintenance organizations, $30,000 if wilful, or suspension or revocation; up to $2,500 and $5,000 for other licensees. The director may examine at the entity's expense
Trade practiceA violation is an unfair trade practice under Section 39-5-20 and subject to Sections 39-5-110 to 39-5-160, § 38-93-90(B)Section 39-5-110: attorney general civil penalty up to $5,000 per wilful violation; Section 39-5-140 private action individually, not in a representative capacity, with treble damages for wilful or knowing conduct
Private actionAn injured individual may recover in court, § 38-93-90(D)Equitable relief, which may include a retroactive order directing coverage on the terms that would have applied, plus actual damages
Fees§ 38-93-90(E)Costs and reasonable attorney's fees to the prevailing party, without limiting that term to a plaintiff

One cross-reference is worth flagging. Section 39-5-40(c) of the trade practices act says it "does not supersede or apply to unfair trade practices covered and regulated under Title 38, Chapter 57, Sections 38-57-10 through 38-55-320." Section 38-93-90(B), opening with "In addition," expressly places genetic violations under Section 39-5-20 as well. The chapter does not address the overlap, and no decision resolving it was found.

No published South Carolina court opinion citing Chapter 93, and no Department of Insurance order or bulletin under it, surfaced in the searches for this post. Those searches may not be complete, and the absence of a result is not a statement that none exists.

Where Federal Law Comes In

Subsection 38-93-90(C) names GINA directly, and the issuer provisions in Sections 38-93-60 and 38-93-70 parallel the group market language in 42 U.S.C. 300gg-4. Our post on HIPAA and genetic information in underwriting covers the federal side, and a comparable state regime is charted in Louisiana's R.S. 22:1023, which adds a fixed damages floor South Carolina's text does not have.

Background

For the underlying law rather than this development: South Carolina privacy law, Healthcare privacy law.

Frequently Asked Questions

Does South Carolina's genetic information law apply to life insurance?
Section 38-93-20 applies the chapter to health insurance coverage offered in connection with an individual health plan, a group health plan or a health benefit plan. Its coverage and issuer definitions are tied to the health insurance sections of Title 38.
Who can consent to a genetic test under South Carolina law?
Section 38-93-50 calls for specific informed consent from the individual or a person legally authorized to consent on the individual's behalf, unless the test falls into one of the five listed categories.
Can a South Carolina insurer condition coverage on consent to share genetic information?
Section 38-93-40(B) states that a health insurance issuer may not require an individual to consent to the disclosure of genetic information to the issuer as a condition for obtaining health insurance coverage.
What happens if a health insurer violates South Carolina's genetic privacy chapter?
Under Section 38-93-90, a violation, even a single instance, is an unfair trade practice under Title 38 and Section 39-5-20, and an injured individual may recover equitable relief and actual damages, with costs and reasonable attorney's fees to the prevailing party.

Reporting, not legal advice. This article reports on developments in privacy law using publicly available primary sources, which are linked throughout and listed at the end. It is not legal advice, it is not written or reviewed by an attorney, and it does not assess how any law applies to your situation. Privacy law changes frequently and differs by jurisdiction. Reading this does not create an attorney-client relationship. To find out where you or your business stands, consult a licensed attorney. How we report.