Ethical issues arising from the participation of children in genetic research

2006 ◽  
Vol 149 (1) ◽  
pp. S34-S38 ◽  
Author(s):  
Wylie Burke ◽  
Douglas S. Diekema
Author(s):  
Erin Rothwell ◽  
Jeffrey R. Botkin

There are a number of ethical issues raised when newborns participate in research. Two examples include genetic testing, and the storage and research use of biospecimens collected from newborns. This chapter highlights a range of ethical, legal, and social implications with these practices. Examples from retention of residual newborn screening bloodspots, use of biospecimens collected from infants in biomedical research, concerns with the use of whole genome sequencing, and challenges of consent during the newborn period are discussed. These issues are explored within the context of newborns who are healthy or newborns faced with an undiagnosed condition. At this time, more research is needed to understand the impact of genomics on newborn health care, the storage and use of data generated from biospecimens, and how genetic results from newborns impact families. Further challenges around consent and parental permission are also discussed.


2010 ◽  
Vol 6 (3) ◽  
pp. 101-102
Author(s):  
Nalin Thakker ◽  
Andrew Read

2007 ◽  
Vol 23 (1) ◽  
pp. 11-15 ◽  
Author(s):  
Anco van der Vorm ◽  
Marcel Olde Rikkert ◽  
Myrra Vernooij-Dassen ◽  
Wim Dekkers ◽  

2016 ◽  
Vol 25 (3) ◽  
pp. 421-434 ◽  
Author(s):  
VILHJÁLMUR ÁRNASON

Abstract:This article examines ethical issues debated in Iceland concerning population genetic research, specifically methods of collecting biosamples and ways to return clinically relevant results to participants. Also discussed are scientific research in the health sector, a bill on surrogacy, and a policy on consent for organ donation.


2004 ◽  
Vol 28 (8) ◽  
pp. 279-280 ◽  
Author(s):  
John Wallace

Only one fact is certain about the future of genetic research: it will continue to raise ethical challenges for scientists, research participants, clinicians and patients (Faraone et al, 1999). Ethical issues are of concern in all branches of medicine and genetics, but they are of particular concern in the field of psychiatric genetics. This is because of the special nature of psychiatry, and its position at the intersection of the disciplines of psychology, sociology and medicine. The concern is also related to the perceived subject matter of psychiatry: the core thoughts, feelings and emotions by which we define ourselves as human beings. Many are perturbed by the idea that modifying genes could modify these features. By ‘interfering’ with our genetic heritage, it is perceived that our essential humanity is coming under threat, and the possible outcomes of this interference are worryingly unknown.


2021 ◽  
Vol 2 (2) ◽  
pp. 220-226
Author(s):  
Valéria Csépe

Összefoglaló. A humán kutatások eredményeit bemutató közlemények számos adattal szolgálnak a megismerni kívánt jelenségre vonatkozóan. Általánosan elfogadott elvárás a vonatkozó etikai szabályok szigorú betartása, az előírt vizsgálati protokollok betartása. Az emberekkel végzett vizsgálatoknak azonban van egy olyan dimenziója, amelyre az etikai szabályok nem térnek ki, s amelyek a vizsgálati eredményeket, illetve azok reprezentativitását is befolyásolják. Ezek mindegyike a pszichológia vizsgálódási területéhez tartozik, legyen szó a pszichológiai kutatások etikai kérdéseiről, vagy az orvosbiológiai kutatások, orvosi beavatkozások, illetve azok elfogadásának pszichológiai aspektusairól. A tanulmány a pszichológia megváltozott etikai felfogásának rövid bemutatását követően a genetikai kutatások pszichológiai aspektusait és az egészség-magatartás kritikus kérdéseit elemzi. Az utóbbiak esetében a kockázatészlelés, valamint a bizalom, megbízhatóság pszichológiai modelljeiből kiindulva mutatja be az oltási hajlandóság és az oltásellenesség ismert pszichológiai faktorait. Summary. Publications presenting the results of human research provide a wealth of data on the phenomenon to be explored. It is a generally accepted expectation to adhere strictly to the relevant ethical rules and to the required protocols. However, studies in humans have a dimension that is not fully covered by ethical rules and that also affects the studies’ results and their representativeness. All of these belong to the field of research in psychology, be it the ethical issues of psychological research or the psychological aspects of biomedical research, medical interventions, and their acceptance. Researchers of these and other scientific areas widely believe that science is morally neutral, that is, its task is the discovery of facts, the further development of the investigations’ tools and methods to perform correct analysis and draw reliable conclusions. However, research and development are characterized by a kind of moral neutrality, the essence of which is that the researcher not participating in the decisions on applications is neutral in general. This means that the curiosity driven research should not pay attention to risks associated with the use of results. However, many recent concerns related to the long-term effects of broadly applied inventions speaks for the need on consensus how the consequences could or should be forecasted. Following a brief presentation of the changed ethical perception of psychology, I give some examples on the psychological aspects of genetic research and that of the critical issues in health behavior. Concerns psychological in nature have been articulated in the last decade and it became increasingly clear that genetic testing can also have psychological factors that must be considered. Moreover, the recent focus on psychological aspects of human research shed light on the complexity of health behavior, and questions have been raised about the known psychological factors of the human reactions to suggested therapies, especially those of the vaccination propensity, rejection, and anti-vaccination movements. Although there are only a few systematic studies on this issue, the proper solutions of the Covid-19 should consider the psychological aspects of the acceptance and rejection of vaccination. We may consider that the first waves of the Covid-19 epidemic created situations requiring altered psychological coping, to which psychological research responded primarily by examining the epidemiological situation, illness, and the resulting psychological aspects of lifestyle (treatment of social isolation, stress management, anxiety, depression). Therefore, scientific data on risk perception and psychological factors of vaccine acceptance may contribute to preparedness for globally predicted epidemics and decision-making processes.


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