Genetic Information (informed consent and confidentiality)
DE Genetic Privacy Law
Genetic · Health
Requires written informed consent before anyone obtains, keeps, or discloses a person's identifiable genetic information, requires prompt destruction of samples unless an exception applies, and gives individuals the right to see and correct their genetic records. Exceptions cover criminal and death investigations, paternity, court orders, the state DNA database, newborn screening, and anonymous research.
- Where
- Delaware
- Citation
- 16 Del. C. §§ 1201 to 1208 (Title 16, Chapter 12, Subchapter I)
- Status
- In force
- In force since
- 1998-07-17
- Last amended
- 2015-07-27
- Enforced by
- Superior Court (fines) and the affected individual (civil damages) (1208)
- People can sue
- Yes
- Penalties
- Wilful unlawful retention: fine of $1,000 to $10,000; wilful unlawful obtaining or disclosure: fine of $5,000 to $50,000; wilful disclosure also makes the violator liable for the individual's actual damages, including emotional harm (1208).
- Applies to
- Any person that obtains, retains, or discloses identifiable genetic information or samples about an individual, including labs, providers, insurers, and employers (1202-1206)
Rights it gives people
- Individuals may promptly inspect, request correction of, and obtain their genetic information.16 Del. C. § 1204
Practices it requires
- Obtain signed informed consent (describing the test, purposes, uses, and limits) before obtaining an individual's genetic information.16 Del. C. §§ 1201(4)a., 1202(a)
- Do not retain genetic information without informed consent, and destroy the sample promptly unless retention is authorized by the individual or another listed exception.16 Del. C. § 1203
- Do not disclose identifiable genetic information or the identity of a tested person without the individual's informed consent or a listed exception; the limit follows the data to later recipients.16 Del. C. § 1205
Sources
- Official text
- 16 Del. C. ch. 12, subch. I (Delaware Code Online)
- 71 Del. Laws c. 458 (approved July 17, 1998)
- 80 Del. Laws c. 126 (approved July 27, 2015)
Checked against these sources on 2026-09-25 by research agent (Claude), primary sources.
Unverified: Effective and amendment dates use session-law approval dates; effective-date clauses were not confirmed. 80 Del. Laws c. 96 also amended § 1203 and was not reviewed.
Research reference, not legal advice.