Health Privacy And Why It Matters
We all know that it is important to keep information about our health private. After all, this information is intimate. We do not lay ourselves bare just because. But have you really thought why health privacy matters? Let us explore this issue from a more rational perspective to understand it better.
Patient Confidentiality: The Focal Point of Health Privacy Discussions
The first distinction that we should make is that health care privacy is a term that can cover several topics. Most of the time we equate it to patient confidentiality, but this is not necessarily true.
There are at least two other topics that the term health privacy might cover:
1. Apart from the ethical aspect of patient confidentiality, there is the legal side as well
2. Health information privacy on the research side – as it pertains to people who participate as research subjects in clinical trials
It is interesting to explore the ethical side of patient confidentiality before getting into the other two topics, and how current technological advancements might change the landscape.
Ethical Reasons for Patient Confidentiality
Every person in a society that values individual rights and freedoms, like the US, has a basic right to privacy. This is important for many reasons. When it comes to patient confidentiality, the ethical right to privacygrants us another layer of equality in society.
If no one knows what your medical conditions are, no one can take advantage of your situation or leverage the information in a way that is detrimental to your wellbeing. Nevertheless, there are instance in which yourindividual right to patient confidentiality, and the non-disclosure of a condition you might have, can be detrimental to others.
Consider the following examples:
· Failure to inform sex partners when a patient contracts an STD
· Contracting a highly contagious disease that could affect those in the patient’s community
· Discovering a genetic predisposition to deadly diseases and failing to inform family members or people who are related biologically – think about those who have donated sperm or eggs and have biological offspring they do not know about
· Staying on the same ethical question of privacy in the case of sperm and egg donors – keeping track of the offspring of the donors and helping them understand that they might date, marry, and have children with their own siblings
What is HIPAA Law?
Some of these ethical questions are still not properly codified into the law that protects our privacy. Doctors and other health care providers must tread lightly when it comes to these issues to avoid breachingpatient confidentiality on one hand and violating the ethical duty to protect others from potential harm.
There is, nonetheless, a law that grants patients protection against the involuntary disclosure of sensitive health information. That piece of legislation is called HIPAA, or the Health Insurance Portability and Accountability Act.
There are some useful details everyone should know about HIPAA regulations:
· It was signed into law in1996
· It requires health care providers, insurers, and others who manage patient information to protect individually identifiable information
· That means, names, addresses, email addresses, phone numbers, and other such information should be protected at all times
· Nevertheless, health care providers, insurance companies, and other entities or individuals covered by HIPAA can share individually identifiable information amongst themselves for treatment, payment/coverage, and other related purposes.
Individually identifiable information is the lynchpin of your patient confidentiality and also helps medical staff solve some of the ethical issues that might arise if critical information is withheld from others.
The Role of Anonymity in Healthcare Privacy
When it comes to certain drug trials or other approved medical experiments, it is necessary to use individually identifiable information without disclosing it to others. Furthermore, in clinical trials, patient information should be handled with extreme care when it comes to control groups – those who get the placebo.
You can imagine what would happen if a researcher conducting clinical trials for cancer medication, personally knows someone who was assigned to the control group. It is difficult to resist the temptation to either disclose that information to the patient or try to transfer that person’s file to the group getting the experimental medication.
There is a myriad of other ethical problems that have to do with health privacy and medical research and keeping the information safe is becoming more challenging as technology advances.
Was that Accidental Disclosure of Private Health Information or Gross Negligence?
Think about the troves of data we keep on computers and how vulnerable those systems might be. Data just piles up in servers around the world. With increasingly sophisticated hackers lurking, it becomes more expensive and harder to keep health information private.
The line between an accident and gross negligence narrows as hackers become more skillful, putting more private health information at risk while also creating a complex environment in which negligent providers can actually claim that they did everything necessary to protect patient confidentiality.
Genetic Data Privacy
But data volumes and their safety on servers are not the only aspects we should consider when talking about technology. More individual health information that should remain private is also piling up on the servers of organizations that work under HIPAA, as well as those that do not have to comply with HIPAA laws necessarily.
Genetic data in particular is one of those key vectors that can raise the risk of an attack and make you more vulnerable. Nowadays it is cheaper to obtain that data. Many send in their genetic data along with individually identifiable information to ancestry services.
These services could easily become the target of hackers and genetic information can be much more intimate and important than you think. Meanwhile, some of these services might not be covered by HIPAA, and some of the data they gather is not part of HIPAA protected information.
Healthcare Privacy Presents Ongoing Challenges
Whether it is an ethical conflict or technological advances that test the quality of our healthcare privacy laws, we all need to be aware of the issues to understand what we can do to protect ourselves. Every patient should question how their healthcare providers handle their private information, how they protect it, and under which circumstances they can disclose it.
A more informed public can put enough pressure on providers to raise health privacy standards.
