Joanne R. Pompano
Many of the issues that are of concern to disabled persons are also of concern to individuals who are not handicapped. Three issues that may be of special interest to people who are handicapped have been included in this unit. These issues include: the use of computerized medical records, genetic concerns, and confidentiality of school records.
1. The Issue of Computerized Medical Records
An individual’s medical records can potentially reveal information that is highly personal and sensitive. Records may include information about family relationships, sexual behavior, substance abuse, and private thoughts and feelings related to mental health or genetic disorders.
Americans often assume that the information contained in their medical records will be kept confidential and will be used only to benefit their health and welfare. However, information we provide to a physician may not actually be protected or not as closely as we may like. In fact, medical records may be routinely shared, sold, or used for other purposes often without the patient's knowledge.
Medical data has enormous value to more than just patients and their doctors. Insurance companies, employers, researchers, and commercial enterprises all have an interest in gaining health related information often without the knowledge or consent of the patient.
There are a number of privacy and confidentiality issues concerning the collection, use, and distribution of an individual’s health information.
Information may be used for other purposes:
1. An employer can use the information to reduce health care and workers compensations costs by identifying employees and applicants that may be costly now or in future.
2. There is the fear that health care providers can use the information to do research for reimbursement.
3. Another fear is that insurance companies can use the information to deny or limit coverage.
Many experts feel it is imperative that the privacy of medical records must be maintained. They feel more needs to be done to ensure that only those who have an expressed need to know and have patient authorization be allowed to access protected health information and only for the specific purpose authorized.
These are very important issues because the information from medical records may influence many aspects of an individual’s life including employability, credit worthiness, and the ability to get health insurance.
The Constitution provides little support for medical record privacy claims in the United States. Privacy harms are usually remedied through private actions such as contract and tort, and state agencies. However, the spirit of the Constitution shapes our beliefs about the right of privacy and common law and state statutes provide most of the safeguards against the misuse of personal data.
There is a legitimate fear that more people will have access to personal health records due to the increased use of computerized records. Computers can collect, collate, store, analyze and distribute data quickly, easily, and cheaply. Protecting that information is an issue. Companies can sell and trade this information easily across a vast network of computers.
The automation of medical and health records presents significant patient privacy and confidentiality issues.
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Databases may contain errors in information
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An increased amount of data can be can be stored and shared as computer become more powerful and cheaper to use.
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The need to limit the collection, use, disclosure and retention of records
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The need to ensure that records are used for the purpose of caring for the patient.
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Obviously the growth of managed care organization complicates these problems because they are based on many health care providers sharing information on a patient.
Many believe that privacy must be extended to the right of an individual to determine how, when and to whom information about them is used, distributed, stored and accessed.
2. The Issues of Genetics
Genetic errors can increase an individual’s risk of developing disorders such as cancer, heart disease, and diabetes. In fact, an estimated 3,000 to 4,000 diseases, including cystic fibrosis and muscular dystrophy, are believed to be inherited by errors in genes. (8)
The Human Genome Project has identified nearly all of the 50,000 to 100,000 genes that make up the human genome. This information provides an opportunity for health care to develop strategies to prevent or reduce the effects of genetic disease. (9)
DNA technology provides this important assistance to the diagnosis and treatment of disease. However, DNA also provides the most personal and private data not just about an individual but his family. As genetic testing increases in use there are significant risks that highly sensitive information will be easily accessible without the knowledge or consent of the patient. Thus, there may be an even greater increase in the loss of privacy and genetic possibilities of discrimination.
Genetic research has made it possible to identify the genetic basis for many human diseases and disorders. This research provides an increased possibility detecting diseases and conditions at an early stage. In fact it may also be possible to provide information about problems that may occur in the future. Thus, we may be increasingly able to develop prevention strategies and treatment.
There are many problems, however, that goes along with this increase knowledge of our genetic make-ups. Insurance companies can try to reduce costs by denying coverage or increasing the amount of cost for coverage. In the workplace, genetic information to discriminate against individuals by denying jobs or benefits because an employee posses a particular genetic trait. This may be so even when the genetic problem has no bearing on their ability to do the job or even though the individual may never come down with the illness or condition.
Due to these problems, many are calling for federal legislation to protect them from genetic discrimination in the workplace.
Genetic tests alone cannot predict with certainty whether a person with a particular genetic error will develop a disease or disorder and the majority of diseases do not result solely from a genetic predisposition. There are many factors involved such as the interaction of genes including environmental factors, occupation, diet, and lifestyle.
Technologies are being developed that may provide a means of early detection. Advances in research also suggest that detection, treatment and genetic alterations may help prevent or reduce diseases and medical disorders. For example, genetic testing for glaucoma and some cancers may allow the patient to take preventive measures before the disease causes harm.