Joanne R. Pompano
It is difficult to ensure that medical information is not used to discriminate against individuals. There are no federal laws that directly and comprehensively protect against abuses in the gathering or use of genetic information in the workplace. A few protections exist incidentally under federal laws that address other types of workplace discrimination
Existing laws do not seem to provide for adequate protection against genetic discrimination in the workplace. There are wide variations among these state laws, which differ in coverage, protections, and enforcement. Due to the growing concern over genetic discrimination in the workplace a number of states have addressed the issue of genetic discrimination in employment through state legislation.
Some states provide protections against various forms of genetic discrimination in the workplace while other state laws only regulate the use of genetic testing in employment decisions and the disclosure of genetic test results. For instance, some States prohibit employers from requiring workers and applicants to undergo genetic testing as a condition of employment.
State and federal protections against employment discrimination based on genetic information varies greatly. Therefore, it may be necessary to enact comprehensive federal legislation that would establish minimum protections. Federal legislation could be supplemented by state laws to ensure that advances in genetic technology and research are used to solely to address medical needs of an individual. Congress has introduced numerous bills, with bipartisan support, recognizing the need for federal protection.
The 1996 Health Insurance Portability and Accountability Act (HIPAA) is the only federal law that directly addresses the issue of genetic discrimination. This act prohibits group health plans from using any health factors, including genetic information, as a basis for denying or limiting eligibility for coverage or for charging an individual more for coverage. (10)
Currently laws prohibiting discrimination based on disability provide a source of protection against genetic discrimination in the workplace such as Title I of the Americans with Disabilities Act (ADA) which is enforced by the Equal Employment Opportunity Commission (EEOC). (11) Similar disability-based anti-discrimination laws, such as the Rehabilitation Act of 1973 provide some protections against genetic discrimination in the workplace. (12)
Under the ADA, individuals with symptomatic genetic disabilities have the same protections against discrimination. Advances in genetic research will likely mean more people will be affected by genetic discrimination based on unexpressed genetic conditions.
The ADA does not protect workers from requirements or requests to provide genetic information to their employers. An employer may not make medical inquiries about a job applicant prior to extending a conditional offer of employment. However, once a conditional offer of employment has been made, the employer may obtain extensive medical information about the applicant. At that point, an employer could obtain require genetic screening as a condition of employment, or purchase genetic information about applicants from a genetic information data bank. Once the applicant is hired the employer may request medical information that is job related.
Title VII of the Civil Rights Act of 1964, is another federal law that may incidentally provide protection against some forms of genetic discrimination. This legislation applies when genetic discrimination is based on racially or ethnically linked genetic disorders. (13)
3. Privacy Protection and Special Populations
Federal legislation has been important to advancing the opportunities and rights of special needs students in the United States. Students will investigate whether these laws provide provisions for ensuring the privacy of disabled persons.
Special Education
In the United States special education programming begin during the early 19th century when the first special schools for handicapped children were established. (14) Prior to this, severely handicapped students were excluded from schools and, in many states; this practice was within the law. Students with cerebral palsy, for instance, could be forced to attend private residential schools or to rely on private tutors, all at the expense of their parents.
This practice continued, in many places, even as educators and parents began to recognize that integrated education was of great value to both the handicapped and non-handicapped student. Students, with a wide variety of disabilities, were educated separately in special education facilities, often far from their homes. Countless others probably never attended school or did not have access to appropriate educational programs.
In the early 1950’s, some school districts began to integrate students with disabilities into their regular programs. However, even though such programs often showed that handicapped students could be active and successful members of their class and communities, many districts began to separate handicap students from their non-handicapped peers in special classes. Often many age groups and disabilities were taught in the same room separated from their non-handicapped peers. (15)
In 1971 a federal district court ruled that retarded children in Pennsylvania were entitled to a free public education. Pennsylvania Association for Retarded Children v. Commonwealth, 334 F.Supp. 1257 (E.D.Pa. 1971) (16) After this ruling other distracts had to look at their educational practices for educating handicapped students.
A subsequent decision in the District of Columbia extended these rights to all handicapped students. Mills v. Board of Education, 348 F.Supp. 866. (17) This case is important because it developed The Individualized Education Plan basis for all subsequent legislation.
Section 504 of the Rehabilitation Act: In 1973, Congress passed Section 504 of the Rehabilitation Act. It reads in part:
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“No qualified handicapped person shall, on the basis of handicap, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity which receives or benefits from Federal financial assistance.... “ (18)
Section 506 requires that organizations, school districts that receive federal financial assistance and other contractors doing business with state and local governments must comply with this law.
The Education for All Handicapped Children Act
In 1975, Congress passed P.L. 94-142 assuring the right of all handicapped children to a public school education. (20 U.S.C. Section 1401 et seq.) (19) This Act is a federal effort to promote the education of all handicapped children. Prior to this, the majority of handicapped children in the United States "were either totally excluded from schools or [were] sitting idly in regular classrooms awaiting the time when they were old enough to `drop out.'" ( )
The Act provides handicapped children with the following:
l. The right to a free appropriate public education.
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2. The development of an individualized education program (IEP)
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3. Provision of special education and related services
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4. Due process to protect parents and students in effort to provide appropriate education
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5. Guarantee that students be educated in the least restrictive environment
A team meeting must be held annually to discuss the goals and objectives for the student. The meeting should consist of: a representative of the local educational agency, the classroom and special education teacher, the parents or guardian, and when appropriate the child. A written document would then be produced that would include:
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The present levels of educational performance
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The annual goals and short-term objectives
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The specific educational services to be provided
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The extent to which such child will be able to participate in regular educational programs
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The projected date for initiation and anticipated duration of such services
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Appropriate objective criteria and evaluation procedures
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Schedules for determining whether instructional objectives are being achieved
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Complaints brought by parents or guardians must be resolved at "an impartial due process hearing." Section 1415(b)(21 )
The demand for special education services rose dramatically when these laws were enacted. Litigation began to define this Act.
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Americans with Disabilities Act
The American with Disabilities Act prohibits discrimination against students on the basis of disability in education programs or activities that receive Federal financial assistance.
Section 504 of the Rehabilitation Act of 1973, Title II of the ADA extends the prohibition to the full range of state or local government services, programs, or activities regardless of whether they receive any federal funding. (22)
The Americans With Disabilities Act and Education
Congress passed the Americans with Disabilities Act in 1992. It created statutory rights of actions to protect the disabled from discrimination. Title II of the Americans With Disabilities Act (ADA) states: No qualified individual with a disability shall be excluded from participation in, or denied access to, programs or activities; denied benefits or services; or be subjected to discrimination by any public entity. (23)
There is limited Federal protection for genetic discrimination. The ADA prohibits employers from discriminating against individuals with physical or mental impairments as longer as they are capable of performing the job. In addition, he ADA extends anti-discrimination protections to employees of working for places that do not receive federal financial assistance.
The Paper Trail of Special Education
By the time a disabled student enters pre-school a mountain of paperwork work may be created about his or her condition and other details of the child’s life. This information is gathered to allow insurance companies, government agencies, educators, and health care professionals to give appropriate services to the child. The information complied by these numerous agencies are often shared.
As the student progresses through the educational system, information is added, discussed, and shared. For a student recognized as special education there may be numerous meetings about the student throughout the year.
Federal privacy laws apply to school, educational agencies and other education institutions that receive federal funds from the U.S. Department of Education.
Education records include a great deal of information about a student including a student’s date and place of birth, parents /guardians, address, grades, test scores, academic records, activities, and official letters, special education records, disciplinary records, medical and health records, documentation of attendance, awards, degrees, schools attended, and personal information such as social security number are routinely included in a student’s educational record.
It is important for disabled persons to ensure their privacy rights. There are many opportunities for disabled individuals to create a paper trail about themselves. For instance, each encounter with doctors and medical personnel, insurance companies, government agencies, and other places that they must rely on also have a file created.
The disabled and their families assume these files are created to aid them and will only be used for their benefit. There are many problems that may be created when that information is used in other ways.