PENNSYLVANIA, November 9 - primary use of assisting the ordering health care professional

and treating care team to diagnose and treat the beneficiary and

shall be subject to the requirements applicable to protected

health information as specified in the Health Insurance

Portability and Accountability Act of 1996 (Public Law 104-191,

110 Stat. 1936) and the Health Information Technology for

Economic and Clinical Health Act (Public Law 111-5, 123 Stat.

226-279 and 467-496) and the attendant regulations including,

but not limited to, the Health Information Portability Act

Privacy Rule as promulgated at 45 CFR Pt. 160 (relating to

general administrative requirements) and 45 CFR Pt. 164 Subpts.

A (relating to general provisions) and E (relating to privacy of

individually identifiable health information).

(f) Genetic data generated from rapid whole genome

sequencing covered under this section may be used in scientific

research if consent for such use of the data is expressly given

by the beneficiary or the beneficiary's legal guardian, in the

case of a minor. The beneficiary, or the beneficiary's health

care provider with the beneficiary's consent or consent of

beneficiary's legal guardian, may request access to the results

of the testing covered under this section for use in other

clinical settings. A health care provider may only charge a de

minimis fee to the beneficiary based on the direct costs of

producing the results in a format usable in other clinical

settings. A beneficiary or beneficiary's legal guardian, in the

case of a minor, shall have the right to rescind the original

consent to the use of the data in scientific research at any

time and upon receipt of a written revocation of the consent the

health care provider or other entity using the data shall cease

use and expunge the data from any data repository where it is

20230SB0965PN1215 - 4 -

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