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Luciana Caenazzo, Lucia Mariani, and Renzo Pegoraro (eds): Convergence of new emerging technologies: ethical challenges and new responsibilities
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La tutela dei minori in biomedicina: nuove sfide per l'etica clinica.
Full text linkClinical ethics in paediatrics may be considered as the clinical application of ethics in the field of paediatrics and its sub-specialties and there are many healthcare settings where the applications of clinical and experimental medicine in paediatrics pose ethical questions of paramount importance, and in which it is often difficult, for healthcare professionals, to make appropriate choices.
The purpose of the PhD project was to analyze the main clinical ethical issues in some areas of pediatrics that have been poorly addressed since nowadays in the literature and may therefore represent new challenges both for ethical reflection and for the contribution that clinical ethics counseling can provide for the analysis of conflicts in concrete cases. When dealing with individual situations it is important to ensure more adequate protection as possible for children involved, in order to respect the rights of children as embodied by the Convention on the rights of the child, which entered into force September 2, 1990.
Each topic has been dealt with starting from the medical ethics principles, in particular, the principle of autonomy and the characterization of the best interests of the child, both when children are placed in their familiar environment and thus are involved in definite relationships with parents, and when they are placed, more generally, in relation to society and to the needs of health promotion and protection of the common good that emerge from research.
The contribution given by clinical ethics consultation can be applied in everyday paediatric practice, facilitating conflict resolution in an atmosphere of respect and attention to the interests, rights and responsibilities of all persons involved
Biobanks and public health: a new challenge for public engagement and trust.
No full textModern biobanks should be considered as important structural platforms for the sharing of samples and data, providing benefits that go beyond those of a single study. To increase the impact of biobanking on feasible strategies to protect and improve people’s health, it could be useful to increase awareness about biobanks’ research potential in the overall scientific community, as well as promoting collaboration among different fields of expertise.
The basis for the involvement of biobanks in public health have already been partly built up, emphasising the synergy in organising efforts and the openness to infrastructure collaboration, to ensure reliable long-term funding and resource sharing for the good of all.
To obtain the maximum benefits possible from biobanks, which currently constitute a set of heterogeneous structures, a strategy of coordinated governance is needed, based on harmonisation of different aspects, built on the consensus of all stakeholders involved and society at large.
It is important that researchers strive to understand public attitudes in this biobanking involvment so that the relationships between public trust in biobanking, donors behaviours and support for public-health involvement in the health-care system can be better understood
Deletion of amelogenin Y-locus: State of the art in gender determination
No full textAccurate gender determination is widely used and it is crucial in many scientific disciplines, especially in profiling for DNA databasing, forensic casework (e.g., identifying the gender of biological material in stains of unknown origin), analysis of archeological specimens, preimplantation/prenatal diagnosis and post-natal diagnosis (e.g., X-linked diseases or children with ambiguous genitals). Today, molecular techniques, also based on length variation in the X–Y homologous amelogenin gene (AMELX and AMELY), are used for sex determination. In humans, the amelogenin gene is a single copy gene located on Xp22.1–Xp22.3 and Yp11.2 and it is sufficiently conserved, so the simultaneous detection of the X and Y alleles using polymerase chain reaction can lead to gender determination. There is a size difference of 6 bp between the X and the Y genes in the most widely used PCR primer set. The presence of two amplified products indicates a male genotype, while a single amplicon implies a female genotype. Several studies, published since 1998, have shown that normal males may be typed as females with this test because the amelogenin gender test may not always be concordant with true male gender: AMELY deletions may result in no amplification product and normal males being typed as female with the test (negative male). To date literature data have supported that the null allele is the result of a larger deletion on the short arm of the Y chromosome and that this occurs in different percentages in different population groups. Considering the consequences of the result obtained using only the amelogenin marker and the potential related interpretation difficulties, the gender misinterpretation may be troublesome in some cases, both in clinical practice and forensic caseworks. Different strategies have been proposed to solve this misinterpretation, such as the use of additional markers to resolve the possible occurrence of AMEY deletion. In this paper we propose a review of the incidence in failures of gender testing among different populations and the different strategies proposed in literature in case of doubt regarding the presence of deleted AME in the DNA profile
Oocyte Biobanks: Old Assumptions and New Challenges
Full text linkThe preservation of fertility is a clinical issue that has been emerging considerably in recent decades, as the number of patients of childbearing age who risk becoming infertile for many reasons is increasing. The cryopreservation technique of oocytes has been developed for many years and nowadays constitutes a method of safe storage with impressive efficacy and high rates of successful thawing. The storage and use for research of oocytes taken for medical or non-medical can be carried out by both public and private structures, through egg sharing, voluntary egg donation and so-called “social freezing” for autologous use. This paper focuses on the oocyte bank as an emerging cryopreservation facility, in which a collaboration between public and private and the creation of a network of these biobanks can be useful in enhancing both their implementation and their functions. Good oocyte biobank practice would require that they be collected, stored, and used according to appropriate bioethical and bio-law criteria, collected and stored according to procedures that guarantee the best preservation of their structural components and a high level of safety, connected with appropriate procedures to protect the rights and privacy of the parties involved and associated with the results of the bio-molecular investigations that will be carried out gradually
Minors Inclusion in the Italian Forensic DNA Database: Which Safeguard between Justice and Individual Rights?
Full text linkThis work deals with issues that arise from some of the provisions of the Italian Law 85/2009, particularly regarding children inclusion in the Italian national Forensic DNA database, that can be considered as an example of legislation which is not “proportionate” to the legitimate aim to protect minors in a context of society’s security through the use of such database. The interesting debate on the juveniles involvement in the forensic database regards the balance between individual rights and the interests of justice, considering that in Italy the interests of justice seems to overcome the minors’ individual rights
Retaining the Genetic Profile of Innocent People: A Difficult Balance Between Respecting the Individual’s Privacy and Public Security
No full textIn the course of investigations related to a penal prosecution in Italy, biological material obtained from individuals considered directly involved in a crime, but neither suspected nor prosecuted,
may be acquired without their knowledge and/or consent. Although scientific progress constantly provides greater potential to forensic investigations, new ethical implications arise from the need to balance the greater efforts towards justice which science allows against the protection of individual human rights. The issue that arises in our case is that a biological sample (and consequently a genetic profile) acquired without the consent and knowledge of the subject might become discriminatory and stigmatizing for the subjects involved (individuals involved in the life of the victim, but neither suspected of carrying out the crime, nor prosecuted) should the investigative activity enter the public domain. The protection of an individual’s privacy within the context of the investigations goes beyond normal parameters of guarantee, because the risk of placing the identi cation process outside the control of the individuals is real. This risk therefore has a social relevance, consider- ing that the investigative process might become discriminating and stigmatizing should the investigation enter the public domain. The safeguarding of privacy rights and the guarantee of society security must not contradict, but rather complement, each other
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