CA Health & Safety Code Section 124975

The Legislature hereby finds and declares that:

(a)

Each person in the State of California is entitled to health care commensurate with his or her health care needs, and to protection from inadequate health services not in the person’s best interests.

(b)

Hereditary disorders, such as sickle cell anemia, cystic fibrosis, and hemophilia, are often costly, tragic, and sometimes deadly burdens to the health and well-being of the citizens of this state.

(c)

Detection through screening of hereditary disorders can lead to the alleviation of the disability of some hereditary disorders and contribute to the further understanding and accumulation of medical knowledge about hereditary disorders that may lead to their eventual alleviation or cure.

(d)

There are different severities of hereditary disorders, that some hereditary disorders have little effect on the normal functioning of individuals, and that some hereditary disorders may be wholly or partially alleviated through medical intervention and treatment.

(e)

All or most persons are carriers of some deleterious recessive genes that may be transmitted through the hereditary process, and that the health of carriers of hereditary disorders is substantially unaffected by that fact.

(f)

Carriers of most deleterious genes should not be stigmatized and should not be discriminated against by any person within the State of California.

(g)

Specific legislation designed to alleviate the problems associated with specific hereditary disorders may tend to be inflexible in the face of rapidly expanding medical knowledge, underscoring the need for flexible approaches to coping with genetic problems.

(h)

State policy regarding hereditary disorders should be made with full public knowledge, in light of expert opinion and should be constantly reviewed to consider changing medical knowledge and ensure full public protection.

(i)

The extremely personal decision to bear children should remain the free choice and responsibility of the individual, and should not be restricted by the state.

(j)

Participation of persons in hereditary disorders programs in the State of California should be wholly voluntary, except for initial screening for phenylketonuria (PKU) and other genetic disorders treatable through the California newborn screening program. All information obtained from persons involved in hereditary disorders programs in the state should be held strictly confidential.

(k)

In order to minimize the possibility for the reoccurrence of abuse of genetic intervention in hereditary disorders programs, all programs offering screening programs for heredity disorders shall comply with the principles established in the Hereditary Disorders Act (Section 27). The Legislature finds it necessary to establish a uniform statewide policy for the screening for heredity disorder in the State of California.