Ethics
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Contents |
Introduction
Rapidly emerging innovative technologies have made prolonged independent community living possible for today’s geriatric population [1]. There is a need for regulating the vast amount of health information and websites offering various kinds of interventions for the sake of preserving the integrity of medicine itself and the dignity of the patient wherein ethics plays a pivotal role. Ethical principles are essential since they provide the basic framework for the development of regulations and guidelines that govern online health information and intervention programs [2] .
Five ethical principles form the basis for evaluating moral conduct in health care: autonomy, veracity, beneficence, non-maleficence, and justice [3] .
- Autonomy - Self-determination, right to privacy, individual freedom, fundamental to informed consent
- Veracity - Telling the truth, keeping promises, open patient–physician relationship
- Beneficence - Doing good, promoting the well-being of others, professional obligation to help those in need.
- Non-maleficence - Avoiding harm to others; protecting patients from danger, pain, and suffering (Hippocratic oath)
- Justice - fairness, respect for equality of all humans, equitable allocation of scarce resources, consideration of social policy.
The above mentioned principles have to be followed by all the stakeholders namely: Consumers/patients,Health care providers,government groups, policy makers,web site developers and web site sponsors.
Issues
Some of the issues that have arisen with the advent of new technologies for provision of online health care are;
- Privacy and security of the consumer’s medical information- This is an extremely important aspect of consumer autonomy and has to be safeguarded in all circumstances. See Privacy & Security section for further information.
- Quality and reliability of the information - Information found on the internet is dynamic, variable and often times inaccurate and it is extremely difficult for a layman to judge the quality of the information provide online.
- Conflict of interest- Sites purporting to provide unbiased information may be violating ethics by selling or promoting medical products of the site sponsors.
- Regulation and verification by experts – It is difficult to regulate and verify information/interventions promoted by websites because of the large number of websites and the ever changing material on them.
- Timeliness of information - Some websites use algorithms to update their date and time stamp automatically giving an impression of frequent review whereas the actual data may be outdated.
- Electronic health records, electronic prescribing and decision support systems - In this arena which is an integral part of home monitoring and independent living, issues related to data ownership, data liability, informed consent to use, retrieval and access are of paramount importance and needs to be incorporated within the appropriate legal and ethical codes [4]. See also section on Digital Health Records for further information.
- Personalized control and surveillance - Issues related to loss of personal freedom and control in cases where the caregiver has partial or total control of the surveillance options need to be resolved. (Mahoney, 2007).
- New technologies - Ever changing technologies are creating new capabilities with their own ethical implications.
Enabling Technologies
Research
A review article by Mahoney et al [5], found that though there is a lot of literature on home monitoring technologies and effectiveness of interventions, there are very few studies focusing on ethical issues related to research or routine clinical practice. This review also came up with the most cited ethical concerns as follows:
- Clarification of informed consent - 50%
- Monitoring mechanisms - 38%
- Privacy and confidentiality - 27%
- IRB approval - 26%
- Mechanism for contacting health care provider - 22%.
The same author also mentions that there is a dearth of studies focusing on the impact of home health technologies on the lives of caregivers.
Standards
There is an urgent need for the standardization of vendor applications to permit clinical data exchange for effective online health care delivery [6]. This has ethical implications as effective data transfer will minimize or prevent data errors and data leaks and reduce problems faced in the areas of security and privacy. For further information see section on Standards.
Gaps
There is a gap between the technology developers who are not thoroughly familiar with the medical domain and may not be fully aware of humanistic concerns and the reviewers with antitechnology biases who may cut short the development of some truly innovative and helpful innovations.
Future Vision
Universal, objective, timely, relevant, accurate, good quality, peer reviewed, standardized online health care delivery with guaranteed security and privacy with appropriate legal expression following standardized ethical codes and guidelines.
References
- ↑ Mahoney et al (2007). In-home monitoring of persons with dementia: Ethical guidelines for technology research and development. Alzheimer’s and Dementia, 3, 217-226.
- ↑ Jimison, H., (2004). Ethical issues in consumer health informatics. 143-149
- ↑ Jimison, H., (2004). Ethical issues in consumer health informatics. 143-149
- ↑ Kluge, E., (1993). Advanced patient records: some ethical and legal considerations touching medical information space. Methods Inf med, 32(2), 95-103.
- ↑ Mahoney et al (2007). In-home monitoring of persons with dementia: Ethical guidelines for technology research and development. Alzheimer’s and Dementia, 3, 217-226
- ↑ Anderson, J., (2007). Social, ethical and legal barriers to e-health. Int J Med Inform, 76 (5-6), 480-3.
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