Medical caregivers have been documenting patients' health data for 4,000 years, ever since ancient Egyptian records were written on papyrus. But the relatively recent move from paper records to digital data has introduced a new world of challenges when it comes to ethically handling health information.
A single breach of a large healthcare database can expose millions of patients to having their most sensitive data used against them. For-profit companies are also increasingly interested in healthcare databases as a way to target potential customers or develop pharmaceuticals.
This is why it is crucial to understand what constitutes unethical data usage, the dilemmas involved in health information storage, and how healthcare data can be collected and analyzed responsibly.
What Is Defined as an Unethical Use of Data?
Patient healthcare data involves more than just medical records. It can also include dental records, biometrics (such as weight or blood sugar levels), behavioral data (such as diet and exercise) and a patient’s insurance information.
Unethical use of this data refers to any practice that violates patient consent, privacy, or the ethical principles of “do no harm” and justice.
This can include:
Data Usage Without Consent: Using patient data for purposes not specifically agreed to by the patient opens up the possibility of exploitation. For example, sharing health information with third parties without authorization could lead to patients being targeted for direct-to-consumer medical marketing.
Discrimination: Allowing health data to be used to create or reinforce biases is unethical and often illegal. For example, if job hiring decisions are influenced by applicants’ health history, such as if someone has a mental illness or heart disease.
Profit Over Patient Rights: Patient data should not be sold to any organization or business, for-profit or non-profit, without safeguarding individual privacy or compensating the patients.
Insufficient Cybersecurity: Failure to properly safeguard sensitive health information with strong cybersecurity measures can lead to harmful data breaches. Storing data for an unlimited period of time also increases the risk it could be breached.
Doctors Influenced by Data Collection: If physicians have a strong focus on data collection, this could negatively impact interactions with patients and influence their care.
Unethical practices harm individual patients but can also reduce public trust in healthcare institutions, making it harder to use health data for beneficial medical innovations.
Guidelines and Regulations: How Is Ethical Data Collection Defined?
Ethical healthcare data collection is guided by principles designed to respect patient rights, foster trust, and ensure data is used for beneficial purposes.
Frameworks like the HIPAA (Health Insurance Portability and Accountability Act) in the U.S., the GDPR (General Data Protection Regulation) in Europe, and the Declaration of Helsinki provide foundational guidelines.
Key Principles of Ethical Data Collection
Informed Consent: Patients must understand how their data will be used and provide explicit permission.
Anonymization and Encryption: Personal identifiers should be removed, and data securely stored to protect privacy.
Purpose Limitation: Data must be collected and used only for clearly defined, legitimate purposes.
Data Minimization: Only the data required for a specific purpose should be collected.
Equity and Accessibility: Data collection and usage should benefit diverse populations and not reinforce inequalities.
The goal of these regulations is to guarantee transparency, accountability, and fairness in how healthcare data is handled.
What Are the Ethical Dilemmas in Health Informatics?
Health informatics is a fast-growing field in the healthcare industry that handles the systems and devices used to obtain, store, and make use of health and medical data. The goal of health informatics is to provide electronic access to medical records for patients and medical professionals, but also to analyze health data to improve healthcare outcomes.
The ethical dilemmas in health informatics arise from balancing innovation with the need to protect patient rights and trust.
The Responsible Healthcare Data Use Dilemma - Healthcare data often serves dual purposes: improving individual care and advancing public health. This duality creates a conflict between individual privacy and collective benefit. The challenge lies in using data for maximum societal benefit, while minimizing harm to individual patients.
The Data Ownership and Consent Dilemma - Who owns healthcare data? While patients often believe they own their medical information, healthcare providers and institutions often control it. Once a patient shares their health data, they may have little or no say in how it is used. This ambiguity around ownership can lead to ethical conflicts, especially when data is used for secondary purposes such as research or commercialization.
Breaking Down the Different Ethical Dilemmas with Healthcare Data Collection
Let’s take a closer look at some of the specific dilemmas related to healthcare data collection:
Privacy vs. Public Good
Analyzing healthcare data has many benefits. The process can identify health trends, predict disease outbreaks, and improve treatments. But using healthcare data for public good often requires gathering large amounts of individual data from many sources. This raises concerns about whether patients should sacrifice some privacy for a collective public benefit. Striking a balance between these two priorities remains an ongoing challenge in the medical information field.
Bias in Data and Algorithms
AI and machine learning systems in healthcare often rely on historical data. If this data reflects societal biases, these systems can bolster inequalities among patient groups. For example, diagnostic tools may be less accurate for minority populations due to underrepresentation in training datasets. Ensuring data collection is ethical requires a deliberate effort to ensure inclusivity and fairness.
Consent in Emergencies
During urgent situations such as natural disasters or pandemics, there is often pressure to bypass the standard patient consent process for the sake of speed. This can save lives, but it can also lead to misuse of data collected under less-than-transparent circumstances.
Healthcare Data Commercialization
The healthcare industry is increasingly data-driven, and patient information has become a valuable commodity. Companies may exploit healthcare data for profit, often with little or no benefit to the patients who shared it. Ethical guidelines and regulations are needed to ensure that profiting from healthcare data doesn’t overtake patient rights and well-being.
Cross-Border Data Sharing
Global healthcare partnerships often require sharing data across many nations. However, varying regulations and norms around the use of personal data can create ethical and legal challenges. This is relevant in Europe where organizations and healthcare professionals in different EU Member States can exchange patient health data using an approved system. This can allow patients to access their prescriptions and health information anywhere in the EU, but it increases privacy risks.
How Can Businesses Ethically Collect and Analyze Healthcare Data?
There are a number of best practices businesses and organizations handling healthcare data should adhere to, including:
Invest in Security: Healthcare data must be protected with the most up-to-date cybersecurity methods including encryption and anonymization. This minimizes the risk of breaches and reduces privacy concerns, making patients more comfortable with sharing their information.
Keep Identities Confidential: Removing names isn’t always enough to keep patients anonymous. The more data associated with an individual patient, the more opportunities there are to identify them through deductive identification. For example, including patients’ geographical information can make it easier to deduce identities. If a data set examines patients receiving a certain treatment in a small community, readers may be able to determine their identities, especially if cross-referenced with social media or geo-location data.
Incorporate Ethical Reviews: Ethics boards or committees should oversee and review healthcare data projects to ensure compliance with regulations and ethical principles. This review process can help identify potential problems before they begin.
Be Transparent: Businesses and organizations should clearly communicate what data is being collected, why, and how it will be used. Patients should be empowered to make informed decisions about their data with options to opt in or out of specific uses of their health data.
Prioritize Equity: Datasets must represent diverse populations to avoid biases that disproportionately impact underserved groups. Inclusive data practices lead to more equitable healthcare outcomes.
Comply with Regulations and Standards: Work closely with regulators, patient advocacy groups, and governments to ensure compliance with ethical and legal standards. This collaboration can also help identify and address any gaps in current guidelines.
Striking a balance between innovation and ethical considerations with healthcare data is a challenge, but a necessity. When ethical guidelines are followed, healthcare data can transform lives while still respecting the dignity and rights of individual patients.