Health related ethical issues

In health care l issues in health dealing with healthcare, ethical issues are not uncommon. Below are some of the top ethical issues faced in healthcare l issues and mental one in four adults2 in the united states has a diagnosable mental illness in any given year. This is due, in part, to the fact that mental illnesses are viewed by many including some healthcare professionals as “taboo. Racial, ethnic, gender, and gender-identity-based inequalities persist in general healthcare contexts and are exacerbated in mental healthcare y rentmeester, , ama journal of disparities & community is a growing recognition that eliminating health disparities requires research that is not just community-placed, but also community-based. Academic and other non-community investigators partner and collaborate with a goal of influencing change in community health. Major ethical concern in the united states in 2015 is whether or not states have passed legislation to enact medicaid expansion. This aspect of the patient protection and affordable care act is a strategy to provide health insurance access to health care for a population of individuals with less income who otherwise cannot afford health insurance. However, populations in 22 states without medicaid expansion are experiencing injustice compared to those populations who have access to health insurance. People without health insurance often lack access to proper health care and are harmed by delayed diagnosis and treatment as a furlong, phd, jd, in the outpatient often less urgent and critical than those encountered in the hospital, ethical issues are increasing in the outpatient setting. A new model of ethical decision making will be necessary because of the lack of control that health professionals exercise in the outpatient setting, communication challenges, shorter interactions with patients and families, and geographic disbursement amongst clinicians to name a few. Bioethics beyond the bedside4 is a podcast series dedicated to raising awareness about the ethical issues encountered in the outpatient setting, which is the first step in identifying trends and expanding ethics resources outside the hospital or and ian assisted suicide and ian assisted suicide (pas) and euthanasia are hotly debated topics in bioethics. It is a topic that merits much more research and out how you can influence ethical ton university’s online health care ethics programs admit highly accomplished practitioners from across the globe looking to expand their area of competency to include medical ethics and to enhance their ability to make informed decisions in complex situations. Do you want to make a difference in today’s healthcare and address the ethical issues discussed above? 6365 to speak with a program manager and learn more about our online graduate in health care l issues in health dealing with healthcare, ethical issues are not uncommon. Peer review are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in toronto, ontario, canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. The panel was asked the question, what do you think are the top ten ethical challenges that canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the delphi process and consensus was reached after three top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions.

We propose several steps that can be taken to help address this key oundit is not uncommon for health care professionals to clash with the family of the patients for whom they care over treatment decisions. These are just some examples of the kinds of ethical challenges that patients and their families may confront in the health care gh these challenges have been discussed widely in the literature as isolated ethical issues in health care, no attempt has ever been made to collate and prioritize them. Ranking the top ethical challenges facing the public can be an effective and valuable way of bringing them to the public's attention. Moreover, efforts to address ethical challenges in health care vary significantly from one to another, with some receiving a great deal of attention from the media and from government, while others go largely unnoticed; it would be valuable to discover whether the attention given to these challenges is allocated appropriately. Therefore, the purpose of this study was to identify the top ethical challenges facing patients and families in health care, from the perspective of a panel of clinical the study was conducted. The justification for using a panel of bioethicists rather than a panel of community members is that clinical bioethicists will have a greater familiarity with the overall range of challenges than community members due to the fact that the ethical challenges are highly concentrated in their day-to-day clinical bioethicists work in a wide range of health care institutions, including quaternary-level institutions (for both adult and pediatric care), geriatrics/long-term care, rehabilitation, addiction and mental health, and community hospitals. In addition, the experience of the panel members covers both inpatient and outpatient health care. We believe that due to their extensive experience in ethics consultation and bioethics research, this group would be able to offer a uniquely informed perspective on the ethical challenges facing patients and their families. The bioethicists were asked to provide a list of what they believed to be the top ten ethical challenges facing the public, which they could pull from the list of 38 themes or provide additional themes in their own words. In this context the phrase "ethical challenges facing the public" was meant to imply issues, situations, or problems, which have ethical implications, and would impact or affect the public either directly or indirectly. With a total of 113 out of a possible 120 points, the highest ranked ethical challenges facing the public in health care was disagreement between patients/families and health care providers over treatment decisions. According to the panel, these disagreements typically take one of two forms: health care professionals might push a treatment option (either for more or less treatment) that patients and families deep unacceptable, or conversely patients/families may push a treatment option (more or less treatment, or different treatment as in alternative or complementary treatments) that health care professionals deem unacceptable. We expand on this challenge in the "discussion" section of the paper 10 ethical challenges facing canadians in health care. Between patients/families and health care professionals about treatment decisions1132waiting lists1023access to needed health care resources for the aged, chronically ill and mentally ill894shortage of family physicians or primary care teams in both rural and urban settings825medical error766withholding/withdrawing life sustaining treatment in the context of terminal or serious illness567achieving informed consent438ethical issues related to subject participation in research409substitute decision-making3810the ethics of surgical innovation and incorporating new technologies for patient second highest ranked ethical challenge facing the public in health care, with 102 total points, was waiting lists. This has been a growing problem in canadian health care as progressively increasing demand for health care services has put mounting pressure on the already strained provincial health care systems in the country. According to the panel, waiting for needed care may in some cases compromise the health status and outcomes of patients, impede their ability to return to normal functioning at work and at home, and may also contribute to psychological distress. Waiting lists also raise the issue of geographical inequities among regions or various health third highest ranked challenge was issues related to access to needed health care services for the aged, chronically ill and mentally ill. There are two components to this set of issues: one, according to the panel, is the marginalization of populations such as the elderly and mentally ill due to negative attitudes of many citizens toward those populations.

The other component is the historical lack of priority of the needs of these populations in the funding allocation schemes of canadian health care: the bulk of the funding has traditionally gone toward acute, life-saving care, while long-term care, rehabilitation care, and mental health have been grossly under-funded. According to the panel members, we have an ethical obligation to acknowledge and challenge discriminatory beliefs around age, culture, and mental illness that are culturally and socially constructed in order to reduce the risk of emotional and physical harms of the vulnerable in our hospitals and nursing homes. Often these issues emerge when resources are fourth ranked challenge was the shortage of family physicians or primary care teams in both rural and urban settings. According to a 2002 study published by the canadian institute for health information, the proportion of canadian medical graduates starting practice as a general or family practitioner dropped sharply, from a high of 80% in 1992 to only 45% in 2000 [1]. This has become such a significant problem in canadian health care that it was one of the major issues in the recent contract negotiations between the ontario government and the ontario medical association [2, 3]. The shortage of family physicians is of considerable concern for a country whose health care system is centred on universal and reasonable access to medically necessary health care fifth ranked ethical challenge facing the public by the panel was the issue of medical error. To err is human: building a safer health system [4], that the public was made aware of how common medical errors actually are. Although medical errors do not in themselves represent an ethical challenge per se, they do carry with them significant ethical implications. For instance, the prevalence of medical errors raises such ethical questions as if, under what circumstances, and how medical errors should be disclosed to patients and/or on the list, but well behind the issue of medical error in overall scoring, was the challenge associated the appropriate use of pain medication in the terminally or chronically ill, and the use of palliative care at the end of life. For example, health care providers sometimes struggle with how to use pain medication appropriately for terminally ill patients because treating the patient's pain sufficiently can potentially hasten the death of the patient. Decision making around when is the appropriate time to shift from a curative to a palliative approach to h on the list according to the panel was the challenge of obtaining informed consent in the health care setting. Since the ethical principle of respect for patient autonomy, on which the doctrine of informed consent is based, has become a central and foundational principle in modern western health care, the implication of this challenge is eighth top challenge was a family of issues associated with participant involvement in research. There are a wide range of ethical issues related to research in the health care setting, including obtaining informed consent, the balance between providing participants with fair compensation and the risk that the compensation will be a coercive influence, the challenge of balancing benefits and risks of the research, issues around patient privacy and confidentiality, and the ethical appropriateness of involving in research participants who are not capable of giving an informed ninth ranked challenge, finishing closely behind the challenges associated with research, was the challenge of substitute decision making. When a patient is incapable of making a particular health care decision, the health care team will turn to the substitute decision maker to make the decision. Depending on the particular jurisdiction there may be a legal hierarchy of decision makers, which typically places the patient's most intimate relationship at the top (spouse or partner) and other relatives toward the bottom of the hierarchy (many canadian provinces and us states have such a hierarchy written into health care consent legislation). When there is no guidance from the patient, conflict often ensues between the health care providers and the family/substitute decision makers as to what would be in the patient's best y, the tenth ranked challenge was that of surgical innovation. This is a challenge that patients and families will only face indirectly, as the general public is likely unaware of what the issues are related to surgical innovation. Are a number of benefits that can be realized with an exercise focused on ranking the top ten ethical issues the public may face.

These benefits will be discussed in the discussion section ing new contributions to issues described as top ethical challenges by the panel have all been discussed individually in the literature, some extensively. And there have been a few attempts in the past to elicit the views of particular groups on major ethical issues in specific areas. Surveyed a group of oncology nurses to elicit the ethical issues determined to be most important to that group [6]. However, these previous studies have typically focused on the views of a specific group of health care professionals on ethical issues in particular health care contexts. No attempt has ever been made to seek the opinion of clinical bioethicsts who are in a unique position to offer comment on the overall ethical issues in the health care system. Furthermore, despite extensive coverage of ethical issues in the healthcare literature, no systematic effort has been made to collate and rank these kinds of issues from the perspective of the impact on the g public awareness. Even the paper itself can spark discussion and bring the issues to the public's attention. Not only would this help to inform the public about ethical challenges they may confront in the health care system to they can be better prepared for those challenges, but it can help garner the public's support in advocating for steps to be taken to address the top challenges described by the panel will impact patients and their families in different ways and to varying degrees. The same can be said of the third ranked challenge, access to needed health care resources for the aged, chronically ill, and mentally ill, and that challenge will impact an increasing number of patients and families in the future as our populations age and the number of elderly and chronically ill patients rise. This direct impact on the public, combined with the attention that issues like waiting lists do receive in the media, means that some of the challenges described by the panel are already at the forefront of the public's attention. These are the challenges that tend to impact a smaller number of patients and families, such as issues related to participation in research (ranked 8th), or may impact patients and families more indirectly, such as the issues related to surgical innovation (ranked 10th). Focusing attention on the top most interesting result of this study is that the ethical challenge ranked highest by the panel is a challenge that actually receives very little attention in the popular media and at the level of government, and a challenge of which most members of the public are likely completely unaware. It is not surprising, however, that a panel of clinical bioethicists ranked disagreements between patients/families and health care professionals over treatment decisions as the top ethical challenge facing the public in health care. Although the most common arena in which these disagreements occur is the intensive care unit, they can and do occur between patients/families and health care professionals in virtually every health care context: palliative care, rehabilitation, mental health, surgery, general internal medicine, family medicine, and so on. Emotions run high, conflict ensues, and communication inevitably breaks above is a paradigm example of what is often referred to in the literature and by health care professionals in the clinical setting as a "futility" case. Although there are volumes of literature on the problems associated with the definition and use of the concept of futility, health care professionals know exactly what is meant when a colleague uses the concept: the likely harms of the aggressive intervention(s) outweigh the potential benefits to such a degree that subjecting the patient to the intervention(s) violates their professional (and sometimes personal) values. From the perspective of the health care professionals, the "right" decision is obvious and they cannot understand why the family doesn't see it the way they do. This often leads to these families being labelled as "irrational" or "unreasonable" by members of the health care family, on the other hand, views the situation very differently.

From the family's perspective, the health care professionals are being insensitive and disrespectful, unwilling to listen to or accept what is important to them. Sometimes families will go so far as to accuse the health care team of wanting to withdraw treatment to save money or to give the resources to another patient. It is our value systems that influence the decisions we make, especially when we are faced with significant life-altering decisions in the health care setting. But it is not just patients and their families that are guided in their decisions by their values; health care professionals also come to their encounters with patients and families with their own value systems, both personal and professional. The fact that canada is one of the most culturally diverse nations in the world means that clashes between the value systems of patients/families and health care professionals may be more common in canadian health care institutions than in other sing the top ed to the attention given to many of the challenges listed in the top ten, it is remarkable how little attention has been given to the top challenge. It is especially remarkable given that these conflicts occur in health care institutions across the country on a daily basis. Educating health care professionals: although most health care professionals are now taught communication skills, they are not taught the negotiation and mediation skills needed to address serious disagreements. We recommend that all health professional programs – undergraduate, postgraduate and continuing – takes steps to address this deficiency;. Examining the patient's perspective: disagreements between patients or their substitute decision makers and health care teams present a difficult problem with no perfect solution. Some excellent work has been done in the attempt to shift the focus of end-of-life issues from the perspective of health care professionals and bioethicists to patients themselves [9, 10]. National health councils or other similar bodies would be an excellent mechanism to pull together the diverse initiatives described above and to keep the public informed. Moreover, we would predict that the top ranked challenge, disagreements between patients/families and health care providers over treatment decisions, would probably appear at or near the top of similar lists in other industrialized nations. Thus, although the panel was asked to report on the top ethical challenges facing canadians in health care, we believe the results of this study would be of interest to other , because the panel was made up of clinical bioethicists in toronto, the ranking of challenges may not be representative of the challenges facing the entire canadian public. Some of the challenges might be considered more or less significant or prevalent in other parts of canada, especially since there are some very apparent differences between the health care systems of the different provinces. Moreover, although the panel members do represent a wide range of health care instutitions, there were health care settings not represented amongst the group (e. However, we believe that this is not a significant limitation of the study because the purpose was not to make a factual claim about what, objectively speaking, are the top ten ethical challenges facing the public. Rather, the purpose was to identify what those top ten challenges are from the perspective of a group of highly qualified and experienced clinical bioethicists who work in a variety of health care y, we recognize that the modified delphi process that we have presented in this paper is not typical because of the face-to-face meeting of panel members that took place prior to the final round of ranking. Thus, the consensus process itself was not directly affected by the face-to-face ypatients and their families face a number of ethical challenges in health care.

Interestingly, these three context-specific challenges were all ranked in the top four of the top ten ethical challenges facing canadians. Since so little attention has been given to the top ranked challenge, disagreements between patients/families and health care professionals over treatment decisions, we have suggested several steps to help address this top s’ affiliations(1)university of toronto joint centre for bioethics(2)department of medicine, university of toronto. L issues in environmental health research related to public health emergencies: reflections on the gulf b. Program, 2office of the director, and 3epidemiology branch, national institute of environmental health sciences, national institutes of health, research triangle park, north carolina, usa; 4department of epidemiology, gillings school of public health, university of north carolina at chapel hill, chapel hill, north carolina, research in the context of an environmental disaster with implications for public health raises challenging ethical issues. This article explores ethical issues that arose in the gulf long-term follow-up study (gulf study) and provides guidance for future research. Ethical issues encountered by gulf study investigators included a) minimizing risks and promoting benefits to participants, b) obtaining valid informed consent, c) providing financial compensation to participants, d) working with vulnerable participants, e) protecting participant confidentiality, f) addressing conflicts of interest, g) dealing with legal implications of research, and h) obtaining expeditious review from the institutional review board (irb), community groups, and other committees. To ensure that ethical issues are handled properly, it is important for investigators to work closely with irbs during the development and implementation of research and to consult with groups representing the community. Researchers should consider developing protocols, consent forms, survey instruments, and other documents prior to the advent of a public health emergency to allow for adequate and timely review by constituents. Resnik, bioethics program, national institute of environmental health sciences, national institutes of health, 111 alexander dr. Packenham, director of the national institute of environmental health sciences (niehs) office of human research compliance, clinical research program (crp) and vice-chair of the niehs institutional review board (irb); jane m. The comments they made during the review process were incorporated into the study protocol and consent documents and played an important role in ensuring ethical and regulatory oversight of the authors regret this ical research can play a vital role in the response to public health emergencies such as natural disasters, disease epidemics, or terrorism (national biodefense science board 2011; ball 2013; manuel 2001; schwartz 2005). Frieden (director of the centers for disease control and prevention) outlined the need for improved national capabilities to perform critical health research during disasters and other emergencies (lurie et al. 2013) noting that research conducted during and after a public health emergency can provide critical knowledge that supports recovery efforts and improves capacity to deal with future emergencies. For example, research conducted in response to the ebola outbreak in west africa in 2014 has provided public health officials and the general public with additional information about virus transmission, mitigation of health risks, and appropriate measures to protect workers and prevent the spread of disease (iom 2015b). Observational and clinical research can help identify risk factors that impact the long-term health of people affected by public health emergencies and contribute to community and individual resiliency, susceptibility, or gh timely research of populations affected by public health emergencies has been identified as a priority for disaster preparedness, response, and recovery, many challenges remain, including the need to address a number of important ethical issues prior to the onset of emergencies (iom 2015a). In this article, we consider some of these ethical issues by drawing on insights gained from the gulf long-term follow-up study (gulf study; http:///research/atnieh​s/labs/epi/studies/gulfstudy/). Most of the response efforts involved the coordination and support of environmental cleanup and restoration activities, but some of the efforts included environmental health research. As part of the response by the nih to the gulf oil spill, intramural and extramural investigators from the national institute of environmental health sciences (niehs) and other nih institutes and centers partnered with workers and numerous community groups in an array of research efforts to better understand the health impacts of the spill.

The planning of the gulf study, which was the largest and earliest of these efforts, began in june primary objective of the gulf study is to investigate the potential short- and long-term health impacts associated with cleanup of the deepwater horizon oil spill. Secondary objectives include examining biomarkers such as genetic damage and alterations of gene expression in humans, which indicate the potential for adverse human health effects, and creating a resource for research on specific hypotheses or subgroups of interest within the study (sandler et al. The physical and mental health of the workers may have also been affected by a variety of stressors related to the cleanup effort and economic disruption from the spill. Health outcomes of concern include changes in respiratory, cardiovascular, hematologic, and other physiologic functions; cancer; and mental health (sandler et al. Blood, urine, hair, and toenail samples were collected and pulmonary function and blood pressure were measured during the home visits and at the health clinics. A comprehensive clinical examination is also being completed on as many as 4,000 participants who live within driving distance of health clinics in mobile, alabama and new orleans, study participants will be followed for at least 10 years. Since september 2010, investigators have met with representatives from state and local health departments, advocacy and occupational groups representing workers involved in the cleanup, businesses, universities, and cultural and religious organizations. They have also formed a community advisory board with representatives from these different groups and have sought to employ individuals from affected communities to carry out the home visits and related study activities (e. Considering the ethical issues related to the gulf study, it is important to be mindful of some important characteristics of the study population:Many of the participants have suffered from psychological stress, depression, or trauma as a result of the oil spill’s impact on their well-being, community, local economy, and environment (grattan et al. For example, areas affected by the oil spill have some of the highest rates of poverty and unemployment and the lowest rates of access to health care in the united states (http:///hhes/www/cpstables​/032014/pov/pov46_). Department of health and human services (dhhs) require that the risks to human subjects are minimized and reasonable in relation to the anticipated benefits to the participants and the knowledge to be gained (dhhs 2009). The main risks of the study include the potential for bruising or infection at the site where blood is drawn, some coughing or lightheadedness during pulmonary function testing, the risk of psychological stress from answering survey questions related to mental health or substance abuse, and the inadvertent loss of confidentiality. Despite the implementation of the affordable care act, a high percentage of study participants do not have private health insurance, nor are they covered by medicaid or similar programs. Some community activists urged researchers to provide health care rather than or in addition to health research. Although providing health care is outside the scope of nih’s responsibility as a research organization, investigators responded to these concerns by developing, in collaboration with the health resources services administration (hrsa), the substance abuse and mental health services administration (samhsa), and local health departments, detailed information on health care providers in the region and on low- or no-cost health care options that they shared with participants. The study investigators also developed area-specific listings of health and mental health care providers for referral of participants in need of health services. Study staff made direct health care referrals by providing information on federally qualified health centers in the area, including arranging for free care in exceptional study also has provided participants with potentially useful health information, including the results of clinical tests and medical examinations such as blood pressure, pulmonary function, body mass index, and urine glucose levels when available. Participants with abnormal findings were advised to consult a health care provider and were given referrals if needed.

For example, individual-level results explained the normal ranges for the gulf study population and, when pertinent, compared the findings with a nationwide sample such as the national health and nutrition examination survey. The informed consent process presented challenges to the study staff because some participants were suffering from stress, depression, trauma, or other mental health conditions that could compromise their ability to make informed decisions. To address these issues, research staff members were trained on how to conduct consent discussions (sandler et al. Furthermore, some believed it was unethical to ask vulnerable injured parties, such as those impacted by the spill, to participate with no tangible benefit. Many of the participants in the study could be considered vulnerable because of mental health issues, socioeconomic deprivation, minority status, language barriers, or previous experiences with other disasters in their community (kessler et al. Most significant confidentiality issues involved the reporting of suspected child, elder, or spousal abuse or threats of harm to self or others that were discovered during telephone calls or home visits. The need to have appropriate procedures and training in place was anticipated due to information obtained from early meetings with community and local health agencies and from research on prior disasters where mental health issues were paramount (child welfare information gateway 2014). These incidents were handled by notifying the appropriate local authorities when necessary, connecting participants directly with helplines or mental health services, and reporting them to the ct of interest. Since real or apparent financial conflicts of interest can undermine the integrity and trustworthiness of scientific research (iom 2009), it was important for the gulf study to address such issues. Early on, bp provided a $10 million gift to the nih for health research conducted in the states impacted by the deepwater horizon oil spill (niehs 2010). Lawyers, for example, may tell clients not to participate in research lest they create a record that can be used to challenge any possible health claims. Alternatively, individuals who are experiencing health symptoms may have an incentive to participate because they want to create a record of harm for use in litigation. Because of the unique challenges related to the legal climate surrounding such a large-scale environmental disaster, the study team also involved nih legal counsel in the review of proposed consent language and recruitment materials. Although scientific, ethical, and administrative reviews contributed to this delay, most of the delays were due to the time required for project development, ing information needed to design a scientifically valid ng the protocol, consent forms, and ining mechanisms for identifying those who were engaged in the cleanup ng access to ishing partnerships with relevant community and governmental ting some of these activities prior to a public health emergency may help to reduce delays in future nmental health research related to disasters and other public health emergencies raises challenging ethical issues that need to be addressed beforehand, zing risks and promoting benefits to ing valid informed ing financial compensation to g with vulnerable ting participant sing conflicts of g with legal implications of ing review from the irb, community groups, and other committees (e. Ensure that these issues are handled properly, it is important for investigators to work closely with the irb during the development and implementation of research and to consult with groups representing the community and government agencies involved in emergency response. To promote timely irb review, researchers may want to work with their irbs prior to the onset of public health emergencies to develop standardized modular protocols, consent forms, surveys, and related documents (e. When an emergency arises, these materials can be modified quickly to take into account any relevant or unique circumstances, including the population to be studied and the specific exposures and expected health consequences. Such an approach would ensure adequate review by irbs and other groups of complex ethical issues without jeopardizing rapid response to an emerging public health disaster.

The following key components of this project include:Improving accessibility to health data collection tools and research protocols that can be quickly modified and implemented when an emergency ng diverse public and private ing the development of a trained cadre of academic researchers who can collect critical information in the immediate postdisaster environment without interfering with the emergency response (nih 2015). Enabling rapid and sustainable public health research during disasters: summary of a joint workshop by the institute of medicine and the u. Research priorities to inform public health and medical practice for ebola virus disease: workshop in brief (2014). Environ health perspect 113: paper named cehn october 2017 article of the is pleased to announce that “the prevalence of antibiotic-resistant staphylococcus aureus nasal carriage among industrial hog operation workers, community residents, and children living in their households: north carolina, usa,” published in ehp in the april 2017 issue, has been selected by the children’s environmental health network (cehn) as its october 2017 article of the month. Best environmental epidemiology paper—honorable is pleased to announce that “a difference-in-differences approach to assess the effect of a heat action plan on heat-related mortality, and differences in effectiveness according to sex, age, and socioeconomic status (montreal, quebec)” has been awarded honorable mention as one of the best environmental epidemiology papers published in 2016. Backgrounds lite by inoplugs web design and juwelier schönmann 1010 ncbi web site requires javascript to tionresourceshow toabout ncbi accesskeysmy ncbisign in to ncbisign l listam j public healthv. 300813pmcid: pmc3519346ethical issues in health research with novel information ► article notes ► copyright and license information ►accepted march 20, ght © american public health association. Article has been cited by other articles in cthealth-related research is increasingly drawing on novel sources of online data,Such as crowdsourced information about disease outbreaks, ation provided to health or wellness web sites, internet search personal health, and social network postings that identify offer examples of online sources and their uses, identify ethical and they generate, and formulate key questions for future discussion r work in this area will require cross-disciplinary collaboration p ethics and policy guidance for the ethical use of these novel s in health-related research. Dramatic recent development in health-related research, and public ch in particular, is the emergence in multiple forms of unprecedented uses health information. Google trends, ts for search) and mining personal information from social networking sites terize health behaviors (e. Data sets are created from web sites that use both aggregate and individual user– separately or in combination, create new opportunities to address health issues be an increasingly valuable tool for a wide range of health-related trend toward innovative uses of online data for health-related research may well d with the large amounts of genetic and genomic data collected worldwide in te research projects, some collaborating but others working in isolation. Sophisticated bioinformatics tools increasingly larger and easier storage and combination of data sets for is,6 including the data to electronic medical records and other sources of health information. For example, demonstrated such potential in genomics and pharmacogenomics research,3,7,8 and the us utes of health multiplex initiative currently under way is researching how to ively integrate the results of a panel of 15 genetic tests (i. The health care delivered to large populations of patients who are members ated health care systems. Individuals may search the web for health-related information, may personal health status and behaviors via facebook, or may report on aks or other individual or public health-related aspects of local environments ourcing sites. Such information can be available to those engaging in surveillance as well as health-related research. 13user-supplied information for research raises questions of data quality and accuracy, raises issues regarding the terms under which such information can be used ch. It is our hope that this issue-spotting paper will highlight the need r discussion and will help stimulate the future elaboration of principles to development of policy and practice for the ethically acceptable sourcing and use data for a wide range of health-related research (see the box on the next page).

Wikipedia)interoperability of health data sets: the ability of data systems to exchange information accurately and the information that has been exchanged15search volume patterns: amount of searches that have med for the search term, relative to the total number es that have been performed in the search enginebioinformatics tools: computational and information used in biology and medicineview it in a separate windowhealth information shared by individual users on the webindividuals are voluntarily sharing health and health-related information lves (e. Some examples of sites that invites individuals to share their health- and illness-related a way of creating user communities. A somewhat different example, individuals may intentionally share personal ation on the web yet may be unaware of potential or actual research uses information because the primary use of the site is unrelated to research. It remains unclear ers understand or are even aware that their supplied information can be research, whether for health-related surveillance, research, or information is collected for the purpose of creating personalized tters and information for delivery to users. Health–related information collected from webother research approaches rely on collecting and analyzing existing ation on the web to extract potentially useful health-related information,Rather than relying on users to supply such information to specific . As will be discussed in more detail,Public health data can potentially be derived without the direct knowledge ipants (e. In a project called google flu trends the d algorithms to specific search terms related to influenza and its symptoms,And was able to predict flu outbreak in the united states 2 weeks earlier rd cdc modeling approaches. Subsequent analyses have examined the accuracy approach and its applications, but related approaches have been reported ting flu outbreaks as well as prevalence of other illnesses and diseases. 28–rly, healthmap31 ly available internet resources (and crowdsourced information) to e outbreaks and to provide surveillance for public health threats; and ts searches volume patterns across location and time to determine, e, disease incidence. Some of the information posted and shared by users relates to issues and health-related behaviors. Sites might also gauge the effectiveness and impact of health promotion tion efforts, such as public health campaigns targeting smokers, obesity, nce abuse (see the box on , specific regions, and includes forecast for es of the termgoogle trends: http:///trendsfree google analysis tool that shows volume of searches for. Term; also refers to a project within google to use er; owns and maintains biobank and database used arily share information about their illness or ms, health behaviors, treatments, and the like; s that uses information provided by individuals. On the ground” reporting local conditions; ed by users, and supports the conduct of users as well as researchers for studiesview it in a separate windowlooking forwarddebate concerning the use of individual health information in research ionally focused on balancing a variety of factors: informational privacy duals, the population-oriented goals of public health and biomedical research,The potential benefits to the individuals themselves, the central importance dual consent in research, various aspects of “vulnerability” ial research participants, and the community-level issues raised by groups. The descriptive account sketched previously of the types of sources that may be increasingly useful for health-related research s approaches to research “participation” provide a addressing in a thoroughgoing fashion the ethics and policy questions the use of these technology-driven and user-created data sources. We ch directions for addressing the ethics and policy issues raised by ch approaches previously discussed. With 2 key considerations in mind, tion of research participants and facilitation of high-quality and able research, we outline an agenda of ethics and policy issues that e should form the basis of further and future key safeguard for protection of research participants in the context ical and public health research is informed consent. Checkbox agreements on web site logins that include permission to ’ online information represent genuine and ethically acceptable t? Public health ch for marketing, recruiting, or other business-related motives) a factor ining the need for consent or the form it should take?

2) duals who provide data online understand the issues related to data are they aware of the state of online privacy and the risks to it entailed online environment? Conventional biomedical and public health research, research ethics the primary responsibility for ensuring that informed consent procedures ses are adequate, that risks are minimized and balanced against ts, that participant selection is equitable and vulnerable populations tely protected from risks of harm and exploitation, and that the benefits ch are equitably distributed. Among the questions in need of ion is whether research uses of online health data are or should be subject various laws and policies regarding the ethical conduct of research on ipants. The editorial was a call for clarity and need for rdized review , a key question is whether the current models of biomedical and public ch review are appropriate for health research involving online data sources,Or is there a need for the creation of alternative and more appropriate ses? Does health research based on such data have nt problem of bias and questionable generalizability? It is also an ethical issue ular groups are likely to be deprived of potential research benefits. Based general belief that health research using online information will translate health policy or medical advances, lack of online information bate existing health inequities. Laws related to hip and intellectual property also are implicated as the collected data ical samples become assets of a company (e. And, importantly, the blurring of state boundaries in relation to web-based activities and companies ictional issues that must be law will be a vital factor in formulating appropriate policies and ensuring s of efforts to use online sources in an ethical manner. As usly, the use of online health data in research implicates a wide range y laws, such as those related to health information, internet use, and tion. Online sources and their applications will also challenge protections for research participants’ rights and welfare, related to research oversight, participant recruitment, informed consent, to participants related to potential identifiability and sionsif forecasts are correct and medicine is increasingly characterized by the “ch”—preventive, participatory, predictive,Personalized—we can expect the amount of such electronic health grow exponentially. Be coupled with growing interest by consumers and patients in having access health data and in being in control of its potential uses, se to these developments, it is necessary to adopt a proactive approach to ant ethics and policy issues that have not yet received adequate on these issues is especially timely in the united states, as ning protection of human participants are slated for revision for the in decades. Similarly,The recently proposed revision to the european union data privacy regime will the handling and protection of many categories of digital information,Including health-related information used in research. Policy changes in europe and the united hardly independent from each other because online information does not geographical borders and both policymakers and analysts have suggested strongest governmental policies will probably dictate behavior the unprecedented availability of online information creates challenges that must sed so that valuable health-related research can be undertaken in riate and legally sound ways, all within a clear, overarching ork. Achieving these multiple goals requires focused examination of the ed here, by experts in research ethics and policy, privacy law, atics, public health, and pharmaceutical and biotechnology industries, as by representatives of consumer communities. There is currently no ed ethical and policy guidance when such health research is conducted. Ng on such issues will require that experts work across disciplines ate traditional research principles with a developing body of research rship. 48the policy regime for health research is built on a foundation of trust in protections, to provide assurance that the benefits can be realized in ways risk to individuals and groups.

The use of online information -related research holds out the prospect of a new paradigm of research also necessitate a new paradigm in research protections. Now is the time s these issues because ignoring them can eventually lead to the undermining public’s very trust on which the research enterprise is ledgmentswe would like to thank the anonymous reviewers and the american journal health editor for their insightful participant protectionhuman participant protection was not needed because research and analysis this article are based on literature nces1. The office of the secretary,Department of health and human services, and the food and stration. Available at: http:///sbe/sbe_2020/2020_pdfs/adamick_jessica_ed november 15, es from american journal of public health are provided here courtesy of american public health s:article | pubreader | epub (beta) | pdf (562k) | citationshare.