Section 124975 Of Article 1. Hereditary Disorders Act From California Health And Safety Code >> Division 106. >> Part 5. >> Chapter 1. >> Article 1.
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.