WHEREAS, the DNA molecule contains information about an individual's probable medical future. This information is written in a code that is rapidly being broken; and
WHEREAS, genetic information is personal information that should not be collected, retained or disclosed without the individual's authorization; and
WHEREAS, the improper collection, retention or disclosure of genetic information can lead to significant harm to the individual, including stigmatization and discrimination in areas such as employment, education, health care and insurance; and
WHEREAS, an analysis of an individual's DNA provides information not only about an individual, but also about the individual's parents, siblings and children, thereby impacting family privacy, including reproductive decisions; and
WHEREAS, current legal protections for medical information, tissue samples and DNA samples are inadequate to protect genetic privacy; and
WHEREAS, laws for the collection, storage and use of identifiable DNA samples and private genetic information obtained from those samples are needed both to protect individual privacy and to permit legitimate genetic research; and
WHEREAS, progress in mapping the genes that cause breast cancer and other diseases has far outpaced the development of a legal and ethical context in which genetic information can be properly evaluated; and
WHEREAS, effective tests to determine the presence of genes that cause breast cancer and other diseases carry with them the devastating potential for discrimination against carriers of these genes.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF DELAWARE:
Section 1. Amend Chapter 23, Title 18, Delaware Code by adding thereto the following new section to read as follows:
12317 Genetics based discrimination
(a) As used in this section:
(1) 'Genetic characteristic' means any inherited gene or chromosome, or alteration thereof, that is scientifically or medically believed to predispose an individual to a disease, disorder or syndrome, or to be associated with a statistically significant increased risk of development of a disease, disorder or syndrome.
(2) 'Genetic information' means information about inherited genes or chromosomes, and of alterations thereof, whether obtained from an individual or family member, that is scientifically or medically believed to predispose an individual to disease,
disorder or syndrome, or believed to be associated with a statistically significant increased risk of development of a disease, disorder or syndrome. This includes, but is not limited to, information regarding carrier status, information regarding an increased likelihood of future disease or increased sensitivity to any substance, information derived from laboratory tests that identify mutations in specific genes or chromosomes, requests for genetic services or counseling, tests of gene products, and direct analysis of genes or chromosomes.
(3) 'Genetic test' means a test for determining the presence or absence of an inherited genetic characteristic in an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to identify a predisposing genetic characteristic associated with disease, disorder or syndrome.
(4) 'Insurance' means health coverage as defined in this Title or in regulations promulgated by the Insurance Commissioner -not including disability insurance or long term care insurance.
(b) No person shall discriminate against any individual in the issuance, denial, or renewal of or in the fixing of the rates, terms or conditions for insurance as defined in subsection (a)(4} of this section.
(c) No cause of action in the nature of defamation, invasion of privacy or negligence shall arise against any person for disclosing personal or privileged information in accordance with this Act, nor shall such a cause of action arise against any person for furnishing personal or privileged information to an insurance institution, agent or insurance support organization; provided, however, this section shall provide no immunity for disclosing or furnishing false information with malice or willful intent to injure any person. Additionally, no person shall be found in violation of this section because the person receives genetic information or the results of a genetic test through inadvertent disclosure by a medical professional."
Section 2. Amend §710, Title 19, Delaware Code by adding thereto definitions as follows and renumbering and alphabetizing the other definitions accordingly.
—Genetic information' means the results of a genetic test as defined in 18 12e1. C. § 23! 7(a)(3).
'Job related and consistent with business necessity' means the condition in question renders the individual unable to perform the essential functions of the position that such Individual holds or desires. This includes situations in which the individual poses a direct threat to the health or safety of himself/herself or others in the workplace."
Section 3. Amend §711, Title 19, Delaware Code by inserting "genetic information" between "marital status," and "color" each time they appear in subsections (a), (b), (c), (f) and (g) thereof and by inserting "genetic information" between "religion," and "age" each time they appear in subsection (e) thereof.
Section 4. Amend §711, Title 19, Delaware Code by adding the following subsection thereto and by relettering the subsequent subsections accordingly:
"(e) It shall be an unlawful employment practice for an employer, employment agency, labor union or joint labor-management committee controlling apprenticeship or other training or retraining, including on the job training programs to intentionally collect, directly or indirectly, any genetic information concerning any employee or applicant for employment, or any member of their family, unless: (1) it can be demonstrated that the information is job related and consistent with business necessity; or (2) the information or access to the information is sought in connection with the retirement policy or system of any employer or the underwriting or administration of a bona fide employee welfare or benefit plan."