Law / United States / 
Delaware
Delaware genetic information statute: informed consent, retention, access and disclosure
Del. Code Ann. tit. 16, §§ 1201 to 1208
In force.
A sensitive categories rule binding public and private bodies.
- Obligation class
- Consent, Data subject rights, Retention, Disclosure
- Audit expectation
- none
As of .
What it requires
- Do not obtain genetic information about an individual without first obtaining the individual's informed consent, a signed consent form that describes the genetic test or tests to be performed, its purposes, potential uses and limitations and the meaning of its results, and says the individual will receive the results unless the individual directs otherwise. Section 1202(b) lifts the bar for the purposes it lists, such as a law-enforcement identification in a criminal investigation, paternity, newborn screening and anonymous research.
- Do not retain an individual's genetic information without first obtaining informed consent (a signed consent form describing the information to be retained, its potential uses and limitations), unless one of the exceptions in section 1203(a) applies. Destroy the sample from which genetic information was obtained promptly, unless section 1203(b) allows retention, including retention the individual authorizes.
- On an individual's request, promptly let the individual inspect, request correction of and obtain the genetic information in that individual's records.
- Do not disclose, and do not comply with a subpoena or other compulsion to disclose, the identity of an individual on whom a genetic test has been performed or genetic information about the individual in a manner that permits identification, unless section 1205(a) allows it, for example with the tested individual's informed consent describing the information to be disclosed and to whom. The bar also reaches a later discloser who received the information from another person.
These lines are LexLint's reading of the law's text, as of .
If you get it wrong
Private right of actionYes
Penalty structure
Section 1208 sets fines for a wilful violation: not less than $1,000 and not more than $10,000 for retaining genetic information or a sample, and not less than $5,000 and not more than $50,000 for obtaining or disclosing genetic information. The largest ceiling is recorded as the cap. Section 1208(d) gives the Superior Court jurisdiction over all violations of the subchapter.
- Rule
- Fixed only
- As of
- Currency
- USD
- Fixed cap
- 50,000
What this law does
No person may obtain genetic information about an individual without first obtaining informed consent from the individual. No person may retain an individual's genetic information without informed consent unless one of the exceptions in section 1203(a) applies. The sample from which genetic information has been obtained must be destroyed promptly unless one of the exceptions in section 1203(b) applies.
An individual may, promptly upon request, inspect, request correction of and obtain genetic information from the records of that individual. A person may not disclose, or be compelled to disclose, the identity of an individual on whom a genetic test has been performed, or genetic information about the individual in a manner that permits identification, unless section 1205(a) allows it. Chapter 458 of volume 71 of the Laws of Delaware was approved .
The disclosure bar in section 1205 of title 16 applies to any subsequent disclosure by any person after another person has disclosed the information. Subchapter I of chapter 12 of title 16 applies only to genetic information or samples that can be identified as belonging to an individual or family.
A person who wilfully retains genetic information or a sample in violation of subchapter I of chapter 12 of title 16 is fined not less than $1,000 and not more than $10,000, and a person who wilfully obtains or discloses genetic information in violation is fined not less than $5,000 and not more than $50,000.
A person who wilfully discloses an individual's genetic information in violation of subchapter I of chapter 12 of title 16 is liable to the individual for all actual damages, including damages for economic, bodily or emotional harm proximately caused by the disclosure.
When LexLint raises it
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