Suchergebnisse

Recently, several genetic variants have been associated with increased or decreased risks of becoming infected and/or seriously ill with COVID-19—not only offering important potential medical benefits but also posing critical ethical questions. These genetic factors, some of which are associated with blood type, may account for variations in observed responses to COVID-19. Hence, assessments of these genetic differences and blood type could provide possible benefits in gauging patients' risks of disease acquisition and prioritising allocation of interventions or vaccines, if supplies are limited. The media has widely reported these findings, and people online are now discussing their blood type and its possible effects on their COVID-19 risks, but several ethical concerns arise. Individuals possessing genetic variants or blood types associated with lower risk may engage in 'risk compensation', erroneously assuming that they can protect themselves less, and hence less frequently wearing masks or washing hands. Given the ongoing COVID-19 pandemic, many physicians, hospitals, patients, policymakers, members of the public, testing companies and others may well consider these factors in making critical prevention/treatment decisions. Researchers, providers and others should thus begin to address these concerns. Increased awareness and education aimed at providers, patients, family members, public health officials, political leaders and the public-at-large are critical. Attitudinal research is vital to examine how providers, patients and the public understand these findings. Ethical frameworks and guidelines are needed, addressing whether such genetic information should be incorporated into decisions regarding allocation of scarce resources—including hospital and ICU beds, ventilators, medications (eg, remdesivir) and vaccines—and if so, how.

Abstract Background Egg donor agencies are increasingly being used as part of IVF in the US, but are essentially unregulated, posing critical ethical and policy questions concerning how providers view and use them, and what the implications might be. Methods Thirty-seven in-depth interviews of approximately 1 h were conducted – with 27 IVF providers and 10 patients. Results Clinicians vary in their views and interactions concerning egg donor agencies, ranging widely in whether and how often they use agencies. Agencies may offer egg recipients increased choices, but raise ethical and other concerns regarding respect for donors as individuals (e.g., adequacy of informed consent), potential harms, justice (e.g., concerns about possible eugenics – by encouraging and facilitating selection and marketing of facts for offspring), and donors constituting a vulnerable group. The quality of agencies appears to vary considerably, from acceptable to problematic. Agencies' medical and psychological screenings of donors can range, and be minimal. Not all agencies adequately track donors' prior numbers of donations, or share the relevant records with clinics. Clinics may find that potential donors have genetic mutations and medical problems about which they were unaware. Yet agencies and clinics do not provide care for such donors, generating stress. Dissemination of donors' personal data can potentially threaten confidentiality. Questions emerge of whether increased monitoring/oversight of agencies may be beneficial. Conclusions These data, the first to examine providers' views and interactions regarding egg donor agencies, suggest wide variations in quality and use of agencies, and have critical implications for practice, policy, education and research. Given the potential limitations of the current model of self-regulation of agencies, the present data suggest needs to consider stronger professional guidelines or possible governmental regulations to establish, require and enforce higher standards for agencies to follow, regarding advertising to potential donors and recipients, arranging for appropriate informed consent concerning risks and benefits involved, and for quality control. Appropriate informed consent should be obtained from potential egg donors, including the fact that they may learn about mutations or medical problems about which they were unaware, but for which they will not receive treatment as part of this process. Enhancing understanding among the public-at-large about what egg donation entails may also be helpful.

Though the US passed the Genetic Information Non-Discrimination Act, many questions remain of how individuals confronting genetic disease view and experience possible discrimination. We interviewed, for 2 hours each, 64 individuals who had, or were at risk for, Huntington's Disease, breast cancer, or Alpha-1 antitrypsin deficiency. Discrimination can be implicit, indirect and subtle, rather than explicit, direct and overt; and be hard to prove. Patients may be treated "differently" and unfairly, raising questions of how to define "discrimination", and "appropriate accommodation". Patients were often unclear and wary about legislation. Fears and experiences of discrimination can shape testing, treatment, and disclosure. Discrimination can be subjective, and take various forms. Searches for only objective evidence of it may be inherently difficult. Providers need to be aware of, and prepared to address, subtle and indirect discrimination; ambiguities, confusion and potential limitations concerning current legislation; and needs for education about these laws. Policies are needed to prevent discrimination in life, long-term care, and disability insurance, not covered by GINA.

A "take home baby" : reproductive dreams and journeys -- "Not part of the parent club" : problems conceiving a healthy child -- Becoming an infertility patient : choosing treatment -- Choosing eggs -- Choosing sperm -- Choosing embryos to avoid disease -- "Family balancing" : choosing sex and other traits -- "Two kids for the price of one?" : choosing twins -- Choosing wombs -- Choosing children -- Choosing doctors -- "Good enough parents?" : choosing patients -- "How much is a child worth?" : choosing budgets -- Emotional roller-coasters : countering other stresses -- Choosing supports -- "Meant to be?" : choosing religion and spirituality -- Choosing education -- Choosing policies -- Designing our future world.

Research on human beings saves countless lives, but has at times harmed the participants. To what degree then should government regulate science, and how? The horrors of Nazi concentration camp experiments and the egregious Tuskegee syphilis study led the US government, in 1974, to establish Research Ethics Committees, known as Institutional Review Boards (IRBs) to oversee research on humans. The US now has over 4,000 IRBs, which examine yearly tens of billions of dollars of research -- all studies on people involving diseases, from cancer to autism, and behavior. Yet ethical violations persist. At the same time, critics have increasingly attacked these committees for delaying or blocking important studies. Partly, science is changing, and the current system has not kept up. Since the regulations were first conceived 40 years ago, research has burgeoned 30-fold. Studies often now include not a single university, but multiple institutions, and 40 separate IRBs thus need to approve a single project. One committee might approve a study quickly, while others require major changes, altering the scientific design, and making the comparison of data between sites difficult. Crucial dilemmas thus emerge of whether the current system should be changed, and if so, how. Yet we must first understand the status quo to know how to improve it. Unfortunately, these committees operate behind closed doors, and have received relatively little in-depth investigation. Robert Klitzman thus interviewed 45 IRB leaders and members about how they make decisions. What he heard consistently surprised him. This book reveals what Klitzman learned, providing rare glimpses into the conflicts and complexities these individuals face, defining science, assessing possible future risks and benefits of studies, and deciding how much to trust researchers.

With the recent election of Joe Biden Jr, who is currently 78 years old and will be the oldest person inaugurated as US President, potential issues related to presidential health may emerge along with dilemmas concerning the privacy and confidentiality of the president's medical in- formation. Questions arise about what information the public has a right to know about a president's health and who should decide and how. These issues require attention and informed public and professional discussion.

Recently, several genetic variants have been associated with increased or decreased risks of becoming infected and/or seriously ill with COVID-19—not only offering important potential medical benefits but also posing critical ethical questions. These genetic factors, some of which are associated with blood type, may account for variations in observed responses to COVID-19. Hence, assessments of these genetic differences and blood type could provide possible benefits in gauging patients' risks of disease acquisition and prioritising allocation of interventions or vaccines, if supplies are limited. The media has widely reported these findings, and people online are now discussing their blood type and its possible effects on their COVID-19 risks, but several ethical concerns arise. Individuals possessing genetic variants or blood types associated with lower risk may engage in 'risk compensation', erroneously assuming that they can protect themselves less, and hence less frequently wearing masks or washing hands. Given the ongoing COVID-19 pandemic, many physicians, hospitals, patients, policymakers, members of the public, testing companies and others may well consider these factors in making critical prevention/treatment decisions. Researchers, providers and others should thus begin to address these concerns. Increased awareness and education aimed at providers, patients, family members, public health officials, political leaders and the public-at- large are critical. Attitudinal research is vital to examine how providers, patients and the public understand these findings. Ethical frameworks and guidelines are needed, addressing whether such genetic information should be incorporated into decisions regarding allocation of scarce resources—including hospital and ICU beds, ventilators, medications (eg, remdesivir) and vaccines—and if so, how.

While attention has focused in many states and countries on the initial acute phase of the COVID-19 pandemic and on lowering rates of infection and deaths, evidence suggests that among many survivors, the virus is causing ongoing symptoms that need to be more fully anticipated and addressed. Governments, healthcare institutions, providers, patients, family members, the media and the public need to recognize and plan to meet these patients' ongoing needs.

Infertility treatments remain expensive and in many countries are covered by little, if any, insurance, raising critical questions concerning how patients and providers view and make decisions regarding these challenges. In-depth semi-structured interviews of approximately 1 hour were conducted with 37 IVF providers and 10 patients (17 physicians, 10 other providers and 10 patients), and were systematically analyzed. These data suggest current insurance policies and legislation pose critical ethical and logistical challenges for both patients and providers. These individuals face multiple uncertainties about costs and insurance, related to unclear causes of fertility, treatment length, costs and outcomes, and odds that insurers will cover expenses. Insurers frequently decline to agree to reimbursement beforehand, and decide only afterwards, case-by-case, generating stress. Patients and providers thus may not be able to predict how best to allocate limited resources. Providers may advocate for patients, but are usually unsuccessful. Patients may adopt several strategies: e.g., moving/seeking treatment elsewhere, switching or feeling "stuck" in jobs because of insurance, seeking "free" medications, going into debt, or using funds intended for other purposes. Patients do not perceive and respond to resource limitations as fixed phenomena—i.e., patients do not see treatment simply as "affordable" or not. Rather, patients face quandaries of how much to keep spending—how much a child is worth—and are forced to make complex risk/benefit calculations. Couples can disagree, straining relationships. In sum, these data, the first to explore how providers and patients struggle, view, and make decisions regarding limited insurance and resources for infertility, raise several critical ethical and policy issues. These data suggest that individuals have difficulty translating profoundly life-altering, deeply personal quests for meaning and fulfillment into purely economic terms. These findings thus have important implications for future policy, practice, research, and patient and provider education.

Background: Egg donor agencies are increasingly being used as part of IVF in the US, but are essentially unregulated, posing critical ethical and policy questions concerning how providers view and use them, and what the implications might be. Methods: Thirty-seven in-depth interviews of approximately 1 h were conducted – with 27 IVF providers and 10 patients. Results: Clinicians vary in their views and interactions concerning egg donor agencies, ranging widely in whether and how often they use agencies. Agencies may offer egg recipients increased choices, but raise ethical and other concerns regarding respect for donors as individuals (e.g., adequacy of informed consent), potential harms, justice (e.g., concerns about possible eugenics – by encouraging and facilitating selection and marketing of facts for offspring), and donors constituting a vulnerable group. The quality of agencies appears to vary considerably, from acceptable to problematic. Agencies' medical and psychological screenings of donors can range, and be minimal. Not all agencies adequately track donors' prior numbers of donations, or share the relevant records with clinics. Clinics may find that potential donors have genetic mutations and medical problems about which they were unaware. Yet agencies and clinics do not provide care for such donors, generating stress. Dissemination of donors' personal data can potentially threaten confidentiality. Questions emerge of whether increased monitoring/oversight of agencies may be beneficial. Conclusions: These data, the first to examine providers' views and interactions regarding egg donor agencies, suggest wide variations in quality and use of agencies, and have critical implications for practice, policy, education and research. Given the potential limitations of the current model of self-regulation of agencies, the present data suggest needs to consider stronger professional guidelines or possible governmental regulations to establish, require and enforce higher standards for agencies to follow, regarding advertising to potential donors and recipients, arranging for appropriate informed consent concerning risks and benefits involved, and for quality control. Appropriate informed consent should be obtained from potential egg donors, including the fact that they may learn about mutations or medical problems about which they were unaware, but for which they will not receive treatment as part of this process. Enhancing understanding among the public-at-large about what egg donation entails may also be helpful.