Recently in the research and development industry, there has been an increased push for qualified health researchers to share individual-level data of participants in their studies with fellow researchers (Bull, Roberts & Parker, 2015). The basis for the cultivation of this culture of sharing stems from the belief that multiple benefits can be reaped from practicing data sharing. These benefits include building a large international dataset and network to allow for cross-border collaborations to generate greater potential to address significant scientific queries, improving the transparency and reliability of research trials and preventing duplication of studies to avoid wastage of resources (Bull, Roberts & Parker, 2015; Bull et al., 2015). Different stakeholders in the health industry are eager to acquire such benefits, especially funders of research who are gradually making sharing of individual-level data in a study a compulsory condition for researchers who wish to secure funding (Bull, Roberts & Parker, 2015). With such a strong pressure for researchers to share participant data with other colleagues, there is an urgent need to review possible ethical concerns surrounding such a practice to determine if it is moral. The aim of this essay is to discuss whether disclosing personal and unique information of participants to researchers not directly involved in the study should be made mandatory. Sharing will be defined as restricted-data sharing, where other health
A review of the proposed participants of the study will ensure high-risk groups (if any) will be considered as per the National Statement on Ethical Conduct in Human Research (‘National Statement’; NHMRC, 2007). While some of these high-risk
Some data that might be considered sensitive is maybe if one had an illness that almost cost them their life or an injury or an accident or the death of a loved one due to illness. I do feel that this data should be shared differently. I feel like this type of data should have its own set of opt in and opt out system because this is data that could be very sensitive to a patient and should be treated with care. Although this data can be helpful in diagnosing problems or treatments, I feel that they should not be talked about casually if they are talked about, they should be spoken of with just the doctor and the patient and whomever else the patient wishes to hear the sensitive data and that is it. As long as this data is handled with care and not taken lightly, it will not be a problem.
Respect for human dignity includes two rights; the right to self-determination and the right to full disclosure. When conducting a research study these two rights must be maintained to ensure that the participants are not coerced into participation and that they are making the choice of their own free will. Patients must be provided with all the information necessary to make an informed decision and voluntarily participate. No deception or concealed data collection can be done because it will violate the patients’ rights.
Confidentiality in the Healthcare arena can be simply defined as the moral and ethical duty of the Practitioner to keep all the patient’s bio-data under lock and key, and offer a disclosure of those facts that the patient is legally mandated to disclose or deems fit to enhance their positive health outcome. According to the Segen’s Medical Dictionary, “Confidentiality is the ethical principle that a physician may not reveal any information disclosed in the course of medical care, unless the patient who disclosed that information poses a threat to him, herself or others’’
It is essential that health care researchers and/or managers abide by the Health Insurance Portability and Accountability Act of 1996 (HIPPA) before sharing any patient health information to the public. The Privacy Rule under HIPPA will permit the sharing of health information without patient permission for payment, treating, and health care operations, and other specified purposes (Koontz, 2015). In addition, the Security Rule under HIPPA is designed to ensure that patient health information is protected from the unauthorized disclosure and access (Koontz, 2015). After all, the increase in health information technology makes it easier for researchers to obtain patient health data (Largent, Joffe, & Miller, 2011). However, the health care researcher
The research ethics, especially with the human subjects, is a very complex topic, and the completion of the certification opened my eyes on many aspects of research process. I learned how important it is to fully understand the research purpose and the methodology especially when selecting participants. I learned which populations are considered vulnerable, how to balance risk and potential benefits of research, and the importance of obtaining an informed, voluntary consent. I learned how important it is for researchers to ensure subjects confidentiality and privacy. Hardicre (2014) said that the research would be impossible without volunteers, and that the researchers “must act as patient advocates to ensure that every stage of the research
Failure to protect subject’s personal information, is an example of not complying the above two principles in the research industry. Researchers are in a position of dealing with a great deal of very personal information that their participants have agreed to disclose. Depending on the type of study, personal identifiers such as names, birthdates, places of residence etc. may or may not have to be collected. In situations where these data are collected, researchers may take several steps to ensure the confidentiality of their participants’
Review Ethics boards should be considerate of the patient’s they are using to conduct their research by first having them fill out an agreement to participate in the research. This idea is reinforced by a field researcher who had to get the patients to sign permission slips before interviewing them and the research wouldn’t reveal their identity. The field researcher found this was an effective way to make the patients whom the experiment is being conducted on comfortable and willing to participate. It allows the patients to have a say on whether they are willing to have specific research done on them whether related to psychological reasons such as asking questions or to have biological research
A number of key terms describe the system of ethical considerations that the modern research establishments have set up to protect the rights of research subjects. Voluntary participation and confidentiality are principles that demands that the respondents to be free from coercion in any way when participating in the research, protected in the raw data, and published
Informed consent is a method that was established to protect human participants. Bertha Schrems discusses the importance of informed consent in her article “Informed consent, vulnerability and the risks of group-specific attribution”. Research participants are sometimes threatened by abuse or exploitation and the possibility of harm through research. To
I will keep the data confidential by changing identifiable information, such as names and addresses. To ensure that the information a participant gives is not connected to him or her, I will have aliases for the participants. Thus, if the individual divulges in information regarding their academic and cultural stances, financial status, familial relationships, or other sensitive information, they may do so without having that linked back to them. So, while I will know who my participants are, the documentation of the information will not reveal their identities; they will remain anonymous. Any documentation for the study will be secured and disposed of properly, destroying any documents that contain identifiable
The participants’ right to privacy was protected and during data collection, analysis, and reporting, confidentiality of the research data was maintained. All the information recorded on the participants was in agreement with the HIPAA Privacy Rules. The study received permission to use the participant’s information by “institutional review boards at the University of Arkansas for Medical Sciences and the Central Arkansas Veterans Healthcare System” (Li et al., 2015, p. 288). The study does not indicate if the participants were selected in a fair way. They were, however, treated in a fair way and all participants were held to the same sample criteria. No discomfort or harm was inflicted on the participants while the study was taking
In this paper, I will discuss the principles that permit disclosure of protected health information with or without the patient’s consent for each of the four categories, government agencies, legal agencies or representatives and research groups. I will also state whether I feel privacy safeguards are adequate to support those principles.
Although, public health focuses on the population health rather than individuals, situation up-raises where information disclosure are subjective to participants in the CBPR (Public Health Leadership Society, 2002). The question to neither disclose of information nor bring harm to the target community is vital act to preserve the community trust. In the age of social media, such topic of ethical issues remains a concern for the general public. With social media, the limitations set no ceiling in collaborating, developing and networking with other public health professions in shared of CBPR conducted. However, the ethical issue becomes a concern when a research participant can identify with the information post as his or her own breach in consent agreements allegation (Hader & Brown,
This Industry Analysis is on Technology Consulting and Outsourcing Services. Focusing on companies providing Global IT consulting services in this industry. This report will provide industry financial projections, competitors market capitalization, market share, and challenges.