Every time a patient visits a health insurance company to submit a claim, visits a pharmacist or gets treated by a physician, a record is usually kept about his/her confidential health information. Previously, healthcare givers or family physicians safeguarded the confidentiality of health records by locking them away in file cabinets. As of now, the disclosure and use of health information is safeguarded by a collage of state legislations that leave gaps in the protection of patients’ health records that are private and confidential. As a result, the Congress enacted the Health Insurance Portability and Accountability Act (HIPAA) in 1996. The decision to enact this law was to set up privacy standards across the nation (Allen et al., 2004, p.2).
The HIPAA privacy rules also imposed restrictions and caps on who can access and review patients’ confidential health records. There are cases where some suitable parties are authorized by the laws to access and share patients’ confidential health information. Examples include: care and treatment; submitting information to the police (gun wounds, homicide cases, etc); and settling medical bills. Nonetheless, the HIPAA does not extent this gesture to some sensitive health records such as HIV/AIDS information. The current tough state confidentially laws on health information are supported by HIPAA. In fact HIPAA provides an additional layer of protection that limits the disclosure of HIV/AIDS confidential information (Allen et al., 2004, p.3).
Why HIV/AIDS Information Is Extremely Sensitive
Many medical experts as well as the public believe that information related to HIV/AIDS cases is more sensitive than other types of health conditions. However some medical experts are of the opinion that sensitivity is prejudiced and may vary in terms of the context within which a person finds himself/herself. There are several factors that determine the degree of sensitivity of HIV/AID information. These include: socio-cultural and political factors and the health and emotional status of a person. Generally, information that is deemed to be sensitive usually carries with it extraordinary risks if it is made public. HIV/AIDS information falls under this category (Ricciardi, 2010, p.2).
There is no doubt that HIV/AIDS information is more sensitive than other types of ailments. This phenomenon is evidenced by the HIPAA as well as the Americans with Disabilities Act (ADA) which grants HIV/AIDS patients the right to protect the disclosure of their conditions. For example, a recent national survey (carried out on HIV positive patients) found that over 17% of patients refused to give information of their HIV status to their physicians. In addition, 7.9% of those interviewed did not trust their doctors to keep their HIV status information confidential (Rohn et al., 2006, p.6). Issues related to HIV/AIDS information disclosure have also been identified as the main obstacle why HIV/AIDS patients refuse to seek medical attention. This example demonstrates the need to comply with HIPAA with respect to information confidentiality and disclosure. Most of the HIV/AIDS patients regard confidentiality as a matter of self-esteem. In addition these patients are worried that the systems used to collect information on their HIV status may compromise the privacy of their status (Rohn et al., 2006, p.7).
Many HIV/AIDs patients experience stigma when information about their status is improperly disclosed. HIV/AIDS patients (worried about HIV stigmatization) may lose confidence and hope required to start and maintain HIV therapy. This phenomenon is illustrated in one study where a HIV patient (who revealed her status to her doctor) was told by the doctor that her HIV treatment would be terminated if her condition worsened. In another incidence, a dental hygienist swiftly quit her job after one woman revealed her HIV status during the examination. It goes without saying that a number of health care givers have been identified as “concrete and localized sources of stigma” (Rohn et al., 2006, p.8). Clearly, this type of conduct is unethical and unprofessional. It also demonstrates that there may be a clear disparity between what the medical care providers are trained to do and what they put in practice (Rohn et al., 2006, p.8).
The health care providers should weigh the potential risks associated with disclosing HIV status of a patient against potential social support, improved access to medical care services as well as relief gained from sharing vital information. Some HIV/AIDS patients (worried about the consequences of revealing their HIV status to doctors) may resort to various strategies to test the water before they disclose their HIV/AIDS information. For instance, they may initiate discussions on various issues such as homosexuality, HIV/AIDS as well as other issues that afflict the society like terrorism, genocide and hunger to assess the general perception and sensitivity of the health care giver. In addition, HIV positive patients may be unwilling to disclose information about their condition in order to protect their close family members from discrimination as well as stigmatization. Children (in particular) are considered to be vulnerable to discrimination and prejudice by association. What’s more, some HIV positive patients have opted not to inform their children until they are old enough to handle the news. When information about a patient’s HIV status is compromised, he/she is denied the right to regulate the manner in which his/her health information is accessed by other people (Rohn et al., 2006, p.10).
Moreover, fear of stigmatization and confidentiality issues may compromise the correctness of information derived from HIV positive patient. These patients may consider the clinical methods used to collect patient information as moribund and ineffective. For example, the documents that HIV positive patients are required to fill are visibly about HIV condition. As a result the questions contained in these documents may remain unanswered by HIV positive patients particularly if they feel that these documents will be evaluated by members of subordinate staff at the health care institution prior to their final submission to the doctor. In spite of the fact that HIV/AIDS patients are fully aware that health care givers are properly trained on how to deal with HIV/AID matters, they may be unwilling to cooperate based on past experiences. Although significant breakthroughs have been made in terms of HIV treatment, stigmatization can turn out to be a major force through which HIV positive patients feel the adverse effects of the disease. In other words, disclosing information about patients’ HIV status can be a more critical problem the visible symptoms of the HIV/AIDS disease. When a health care giver (such as doctors) infringes on the privacy and confidentiality of a patient’s HIV status information, the patient-doctor relationship deteriorates and can prevent or hamper the ability of the patient to seek health care services in the future. It is worthy to mention that a single incidence of breach in confidentiality is enough to affect the patient’s relationship with any health care giver in the future (Rohn et al., 2006, p.11).
The Social Legal and Ethical Ramifications of Improper Information Disclosure
The HIV/AIDS pandemic has been in existence for the last two decades. Nonetheless, HIV/AIDS patients continue to live in an environment of fear and stigmatization. Much of the stigmatization experienced by HIV/AIDS patients arise from improper disclosure of their conditions by health care providers. As a result of this disclosure, HIV/AIDS patients have been unable to access health insurance. In some cases, a number of them have been dismissed from their jobs and their social as well as family bonds have been severely affected. There are social, ethical and legal consequences of improper disclosure of information pertaining to the HIV status of people. It is also worthy to mention that HIV positive patients have fundamental human rights in terms of the right to privacy and confidentiality of their condition. When this fundamental is breached, they can seek legal redress to address this matter. When effective privacy protection laws do not exist in the society, people will be unwilling to visit health care facilities to get tested for HIV. In addition, improper disclosure of HIV related information may hamper government efforts to control the spread of HIV and reducing the adverse effects of HIV/AIDS on people and the society in general. For HIV positive patients, the ability of the health care providers to dispense HIV/AID services (such as counseling) is determined by the manner in which HIV positive patients share information about their conditions with medical staff (Allen et al., 2004, p.2).
Moreover, research that aim to curb HIV infection rate and provide improved treatment, support and care for HIV/AIDS patients cannot bring forth realistic results unless people suffering from HIV are willing to take part. This means that, in the absence of strong and effective privacy protection laws, this research is likely to be carried out in an unethical as well as unprofessional way. This is due to the fact HIV patients will be unwilling to take part in the research fearing that information about their HIV status will be disclosed without their approval (Allen et al., 2004, p.3).
The ethical codes related to autonomy, dignity as well as respect is compromised when the health information of a person is discharged without his/her approval. It is thus vital that legislators must lend credence to ethical principles when drafting policies and laws to protect the disclosure and confidentiality of individual health information. There is no doubt that HIV/AIDS patients are highly susceptible to stigmatization when information about their health condition is improperly disclosed. Given the prevalence of discrimination and stigmatization that encloses HIV/AIDS disclosure of information about the HIV status of a person may result in the loss of dignity and respect of the affected victim. Improper disclosure of HIV information of a person can lead to several undesirable outcomes. For example, the affected person can lose his/her job. In addition, he /she can be denied the right to take care of his/her children under the Controlled Drug and Substance Act. The affected person may also decide to take legal action against the person(s) and health care institutions that reveal his/her HIV status without his/her prior approval(Allen, 2004, p.5).
There is no doubt that the consequences of revealing private information about the HIV condition of patients are undesirable. Such revelation may cause the victim to lose his/her employment. He/she may also be denied custodial rights because of his/her status. Moreover, the person is victimized by other members of the society. It is important to stress that people living with HIV/AID diseases have fundamental rights to respect and dignity. They also have a right to privacy and confidentiality with respect to information about their HIV status. Healthcare providers should adhere to ethical and professional codes given the social, ethical and legal consequences associated with improper information disclosure.
References
Allen et al. (2004). Privacy Protection and the Disclosure of Health Information: Legal Issues for People Living with HIV/AIDS in Canada. Montreal: Canadian HIV/AIDS Legal Network
Ricciardi, L. (2010). Protecting Sensitive Health Information in the Context of Health Information Technology. Web.
Rohn et al. (2006). How Do Social-Psychological Concerns Impede the Delivery of Care to People with HIV? Issues for Dental Education. Detroit: American Dental Education Association