Patient rights

In the clinical context, the right to privacy refers to a myriad of expectations that include the right to be let alone, the right to physical privacy, the right to have the confidentiality of personal and sensitive information maintained, the right not to have medical procedures imposed without consent, the right to have treatment choices respected and not interfered with, the right to access personal information in a medical record, and the proprietary right to aspects of a person’s identity such as genetic information, pictures of oneself, and biological material that may lead to progeny (sperm, ova, and embryos). Privacy-related rights are protected by common law and federal and state regulations such as the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Agencies such as the Joint Commission on Accreditation of Healthcare Organizations require affiliated institutions to comply with patient privacy guidelines. Patient bills of rights have been adopted by such entities as the American Hospital Association and introduced for legislation in the United States.
The U.S. Constitution does not explicitly protect privacy, but several constitutional amendments, including the First, Third, Fourth, and Ninth Amendments are interpreted to create various privacy rights. A federal commitment to individual privacy is reflected in state privacy laws and case laws pertinent to patient care. In Sanchez-Scott v. Alza Pharmaceuticals, a woman claimed her privacy was invaded when a male pharmaceutical representative was in the examination room during a breast exam. Her oncologist misled the patient by suggesting that the representative was there in a clinical capacity. The California Appeals Court agreed that her privacy rights had been breached.
Patients reasonably expect health care providers to respect their privacy for at least two reasons. First, health care providers need private information for the purpose of treating patients. Disclosure of information to anyone who has a questionable role or no role in patient care would be exploitative. Second, patients will not seek help from clinicians if they do not believe sensitive information is kept in confidence; therefore, patient privacy is pertinent to public health and safety.
In the interest of their health, patients grant health care providers access to private domains, rendering patients vulnerable to exploitation if health care professionals do not respect patient confidentiality. Confidentiality is a centuries-old medical obligation reflected in the Hippocratic Oath: “What I may see or hear in the course of the treatment . . . which on no account one must spread abroad, I will keep to myself.” The Health Insurance Portability and Accountability Act (HIPAA) requires health care providers to obtain patients’ consent to disclose or use personally identifiable information (e.g., name and date of birth) or to release medical information to entities not directly involved in medical services or billing. HIPAA attempts to balance good patient care, which requires patients to relinquish some of their privacy, with patients’ interests in keeping such information confidential. The act requires health care institutions to implement reasonable protections for privacy and confidentiality, and to inform patients of their privacy rights and the institution’s privacy practices.
There are five realms of patient privacy that receive special attention in the law and bioethics: reproductive issues, end-of-life issues, infectious diseases, mental health issues, and genetic issues. Griswold v. Connecticut, 381 U.S. 479 (1965),by supporting the right of clinicians to provide information and instruction about contraception, established that state interference in reproductive decisions often violates a patient’s right to privacy. An exception is when a woman’s privacy right competes with the state’s interest in protecting a viable fetus. According to Roe v. Wade, 410 U.S. 113 (1973), state abortion laws must protect a woman’s right to an abortion until the fetus can live outside the woman’s womb, or when continuing the pregnancy threatens the life or health of the woman.
Patient information about abortion procedures is considered highly sensitive. When, in preparation for a trial, the Department of Justice subpoenaed records of patients who underwent abortion procedures, the U.S. Court of Appeals ruled that the damage to patients and facilities where abortions were performed outweighed the probative value, even when identifying features were removed from the records.
Privacy rights are also often invoked regarding end-of-life decisions. The Patient Self-Determination Act of 1991 and state natural death acts protect patients’ rights not to have treatments imposed against their wishes, and pertain especially to end-of-life treatment decisions. Patients may refuse resuscitation, tube feeding, dialysis, and ventilators in order to allow a natural death to occur.
More controversial is assisted suicide, in which competent patients ask physicians to write prescriptions for lethal medications in order to end their own lives. In the United States, Oregon is the only state where physician-assisted suicide is legal for terminally ill patients. Cases have been brought to other states’ supreme courts in attempts to liberalize patient rights. In 1997, Charles E. Hall, a patient with HIV, asked the Florida court to place an injunction that would stop the state’s attorney from prosecuting Mr. Hall’s doctor if he helped Mr. Hall commit suicide in the future. The injunction was granted in the lower court by appealing to Florida’s privacy law that states “every natural person has the right to be let alone and free from governmental intrusion into his private life.” The Florida Supreme Court ultimately disagreed with the lower court. The appeals for privacy in end-of-life decisions are similar to those for reproductive and sexual privacy practices: the manner in which one lives one’s life is personal, and individuals have the right not to have their end-of-life choices interfered with.
Patients expect higher standards of privacy and confidentiality with regard to information about infectious diseases, particularly sexually transmitted diseases, and psychiatric treatment. This is because of the potential harms that can come from disclosure, which include stigmatization, discrimination within and outside of the workplace, and inability to qualify for health insurance. Many state laws stipulate that health care institutions must ask patients for special authorization to release HIV, substance abuse, and mental health information.
There are limits to privacy protection when a person’s disease may impact the health of others. Infectious diseases such as tuberculosis and HIV must be reported to local public health agencies for the purpose of surveillance, investigation, and intervention, and these disclosures need not be authorized by the patient. Still, only minimal patient identifiable information should be disclosed. In these cases the public health interest outweighs the patient’s right to privacy.
Genetic information and testing also heighten privacy concerns. A genetic test might be used to predict a person’s susceptibility to a disease such as breast cancer or Huntington’s disease. Without strict confidentiality standards, insurance companies or employers might discriminate against patients based on predilection for a disease the person does not even have and may never contract. A number of states have anti-genetic-discrimination laws, and federal bills have been introduced in the Senate and House. Legal protection is important because patients may want genetic information to make prophylactic treatment choices or, as in the case of Huntington’s disease for which there is no cure, to make life plans. Such information impacts not only the patient but other family members who may carry the same gene.
Similarly, privacy is important in prenatal genetic testing. Parents’ choices to terminate or continue pregnancies based on the results of genetic tests are considered as private as other reproductive decisions. Privacy issues are also raised in predictive genetic testing, where a female patient may need genetic information from a relative to determine her predilection for a specific disease such as breast cancer. The patient’s family member may not want to know if she has the breast cancer gene, especially if she is currently healthy. Further, even without testing family members, when one family member confirms he or she has a gene associated with a disease, it raises questions about the genetic disposition of other family members. Because of these complicated patient right and privacy issues, genetic counseling is recommended for all patients who seek prenatal or predictive genetic testing.
Privacy is an essential patient right because without it, patients might be reluctant to share personal and sensitive health information with their care providers. In this way, patients’ rights to privacy help protect their health.