Disability is one of the key public health issues in India and the burden will increase given the trend of an aging population. People with disabilities experience greater vulnerability as they may develop secondary health issues. They face various barriers while accessing health services. This is a major ethical concern. In this article, we frame the barriers to healthcare provision to persons with disabilities and propose an ethical framework to address these barriers. This ethical framework is derived from the basic ethical principles of justice, fairness, trust, solidarity, stewardship, proportionality, and responsiveness. The framework proposes strategies to address these barriers to healthcare service delivery for persons with disabilities in India.
{"title":"Ethical Framework to Address Barriers to Healthcare for People with Disabilities in India","authors":"Rajeswaran Thiagesan, Vijayaprasad Gopichandran, Hilaria Soundari","doi":"10.1007/s41649-023-00239-4","DOIUrl":"10.1007/s41649-023-00239-4","url":null,"abstract":"<div><p>Disability is one of the key public health issues in India and the burden will increase given the trend of an aging population. People with disabilities experience greater vulnerability as they may develop secondary health issues. They face various barriers while accessing health services. This is a major ethical concern. In this article, we frame the barriers to healthcare provision to persons with disabilities and propose an ethical framework to address these barriers. This ethical framework is derived from the basic ethical principles of justice, fairness, trust, solidarity, stewardship, proportionality, and responsiveness. The framework proposes strategies to address these barriers to healthcare service delivery for persons with disabilities in India.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 3","pages":"307 - 317"},"PeriodicalIF":2.9,"publicationDate":"2023-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-023-00239-4.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9796948","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-03DOI: 10.1007/s41649-022-00236-z
Alexis Heng Boon Chin, Sayyed Mohamed Muhsin, Mohd Faizal Ahmad
Non-medical or Social egg freezing (oocyte cryopreservation) is currently a controversial topic in Islam, with contradictory fatwas being issued in different Muslim countries. While Islamic authorities in Egypt permit the procedure, fatwas issued in Malaysia have banned single Muslim women from freezing their unfertilized eggs (vitrified oocytes) to be used later in marriage. The underlying principles of the Malaysian fatwas are that (i) sperm and egg cells produced before marriage, should not be used during marriage to conceive a child; (ii) extraction of mature egg cells from single women being unacceptable; and (iii) fertility preservation in anticipation of late marriage is a conjecture that has not yet occurred. Ovarian tissue freezing can potentially be a more Shariah-compliant alternative to social egg freezing, because once the frozen ovarian cortical tissue sections have been re-transplanted back into the woman, mature egg cells can readily be produced, collected, and fertilized by the husband’s sperm only during the period of marriage contract (′akd al-nikāḥ). Unlike accidental mix-ups with frozen eggs, muddling of lineage (nasab) would be automatically avoided in ovarian tissue freezing due to immunological rejection. However, upon critical analysis based on Qawā’id Fiqhiyyah (Islamic Legal Maxims), Maqāṣid-al-Shariah (Higher Objectives of Islamic Law), and Maslaḥah-Mafsadah (benefits versus harmful effects on society), elective ovarian tissue freezing by healthy single women for social reasons would likely be a highly contentious and controversial issue within Muslim communities that may conflict with conservative social-religious norms. This thus needs further debate among Islamic jurists in dialogue with medical doctors and biomedical scientists.
{"title":"Islamic Perspectives on Elective Ovarian Tissue Freezing by Single Women for Non-medical or Social Reasons","authors":"Alexis Heng Boon Chin, Sayyed Mohamed Muhsin, Mohd Faizal Ahmad","doi":"10.1007/s41649-022-00236-z","DOIUrl":"10.1007/s41649-022-00236-z","url":null,"abstract":"<div><p>Non-medical or Social egg freezing (oocyte cryopreservation) is currently a controversial topic in Islam, with contradictory <i>fatwas</i> being issued in different Muslim countries. While Islamic authorities in Egypt permit the procedure, <i>fatwas</i> issued in Malaysia have banned single Muslim women from freezing their unfertilized eggs (vitrified oocytes) to be used later in marriage. The underlying principles of the Malaysian <i>fatwas</i> are that (i) sperm and egg cells produced before marriage, should not be used during marriage to conceive a child; (ii) extraction of mature egg cells from single women being unacceptable; and (iii) fertility preservation in anticipation of late marriage is a conjecture that has not yet occurred. Ovarian tissue freezing can potentially be a more <i>Shariah</i>-compliant alternative to social egg freezing, because once the frozen ovarian cortical tissue sections have been re-transplanted back into the woman, mature egg cells can readily be produced, collected, and fertilized by the husband’s sperm only during the period of marriage contract (′<i>akd al-nikāḥ</i>). Unlike accidental mix-ups with frozen eggs, muddling of lineage (<i>nasab</i>) would be automatically avoided in ovarian tissue freezing due to immunological rejection. However, upon critical analysis based on <i>Qawā’id Fiqhiyyah</i> (Islamic Legal Maxims), <i>Maqāṣid-al-Shariah</i> (Higher Objectives of Islamic Law), and <i>Maslaḥah-Mafsadah</i> (benefits versus harmful effects on society), elective ovarian tissue freezing by healthy single women for social reasons would likely be a highly contentious and controversial issue within Muslim communities that may conflict with conservative social-religious norms. This thus needs further debate among Islamic jurists in dialogue with medical doctors and biomedical scientists.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 3","pages":"335 - 349"},"PeriodicalIF":2.9,"publicationDate":"2023-01-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00236-z.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9736455","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-12-20DOI: 10.1007/s41649-022-00234-1
Richard Pougnet, Benjamin Derbez, Marie-Bérengère Troadec
Genome editing, for instance by CRISPR-Cas, is a major advancement of the last 10 years in medicine but questions ethically our practices. In particular, human embryo heritable genome editing is a source of great controversy. We explored how this ethical question was debated in the literature from PubMed database, in a period of 4 years (2016–2020) around the announcement of the ‘CRISPR babies’ Chinese experiment in November 2018. We evaluated the weight of the arguments for and against this topic, through an analysis of reviews published on this question. The most important arguments come from the technical perspective: safety issues and benefits, putative long-term effects on the future generations and the need to assess this aspect. Next, foreseeable clinical benefits and the alternatives to these methods are discussed. The number of people that would benefit from such techniques is also considered. However, social and anthropological issues are addressed in a more disparate way. Parenthood and desire for children are sometimes overlooked. Few authors mention social justice, stigmatisation and equality of access. Consent and information are more clearly addressed, as well as the question of the relationship between generations. Finally, the effects on the nature of humankind or human species are far from being consensual; the risks of enhancement, eugenics and transhumanism are raised. We conclude that the risks associated with the immaturity of the technique were at the forefront of the ethical debate on human embryo heritable genome editing. Their consequences were seen as more immediate and easier to handle than those of sociological or anthropological projections, which are more speculative in nature.
{"title":"Mapping the ‘Ethical’ Controversy of Human Heritable Genome Editing: a Multidisciplinary Approach","authors":"Richard Pougnet, Benjamin Derbez, Marie-Bérengère Troadec","doi":"10.1007/s41649-022-00234-1","DOIUrl":"10.1007/s41649-022-00234-1","url":null,"abstract":"<div><p>Genome editing, for instance by CRISPR-Cas, is a major advancement of the last 10 years in medicine but questions ethically our practices. In particular, human embryo heritable genome editing is a source of great controversy. We explored how this ethical question was debated in the literature from PubMed database, in a period of 4 years (2016–2020) around the announcement of the ‘CRISPR babies’ Chinese experiment in November 2018. We evaluated the weight of the arguments for and against this topic, through an analysis of reviews published on this question. The most important arguments come from the technical perspective: safety issues and benefits, putative long-term effects on the future generations and the need to assess this aspect. Next, foreseeable clinical benefits and the alternatives to these methods are discussed. The number of people that would benefit from such techniques is also considered. However, social and anthropological issues are addressed in a more disparate way. Parenthood and desire for children are sometimes overlooked. Few authors mention social justice, stigmatisation and equality of access. Consent and information are more clearly addressed, as well as the question of the relationship between generations. Finally, the effects on the nature of humankind or human species are far from being consensual; the risks of enhancement, eugenics and transhumanism are raised. We conclude that the risks associated with the immaturity of the technique were at the forefront of the ethical debate on human embryo heritable genome editing. Their consequences were seen as more immediate and easier to handle than those of sociological or anthropological projections, which are more speculative in nature.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 2","pages":"189 - 204"},"PeriodicalIF":2.9,"publicationDate":"2022-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00234-1.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9279477","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-12-02DOI: 10.1007/s41649-022-00237-y
Nader Ghotbi
Emotions play a significant role in human relations, decision-making, and the motivation to act on those decisions. There are ongoing attempts to use artificial intelligence (AI) to read human emotions, and to predict human behavior or actions that may follow those emotions. However, a person’s emotions cannot be easily identified, measured, and evaluated by others, including automated machines and algorithms run by AI. The ethics of emotional AI is under research and this study has examined the emotional variables as well as the perception of emotional AI in two large random groups of college students in an international university in Japan, with a heavy representation of Japanese, Indonesian, Korean, Chinese, Thai, Vietnamese, and other Asian nationalities. Surveys with multiple close-ended questions and an open-ended essay question regarding emotional AI were administered for quantitative and qualitative analysis, respectively. The results demonstrate how ethically questionable results may be obtained through affective computing and by searching for correlations in a variety of factors in collected data to classify individuals into certain categories and thus aggravate bias and discrimination. Nevertheless, the qualitative study of students’ essays shows a rather optimistic view over the use of emotional AI, which helps underscore the need to increase awareness about the ethical pitfalls of AI technologies in the complex field of human emotions.
{"title":"The Ethics of Emotional Artificial Intelligence: A Mixed Method Analysis","authors":"Nader Ghotbi","doi":"10.1007/s41649-022-00237-y","DOIUrl":"10.1007/s41649-022-00237-y","url":null,"abstract":"<div><p>Emotions play a significant role in human relations, decision-making, and the motivation to act on those decisions. There are ongoing attempts to use artificial intelligence (AI) to read human emotions, and to predict human behavior or actions that may follow those emotions. However, a person’s emotions cannot be easily identified, measured, and evaluated by others, including automated machines and algorithms run by AI. The ethics of emotional AI is under research and this study has examined the emotional variables as well as the perception of emotional AI in two large random groups of college students in an international university in Japan, with a heavy representation of Japanese, Indonesian, Korean, Chinese, Thai, Vietnamese, and other Asian nationalities. Surveys with multiple close-ended questions and an open-ended essay question regarding emotional AI were administered for quantitative and qualitative analysis, respectively. The results demonstrate how ethically questionable results may be obtained through affective computing and by searching for correlations in a variety of factors in collected data to classify individuals into certain categories and thus aggravate bias and discrimination. Nevertheless, the qualitative study of students’ essays shows a rather optimistic view over the use of emotional AI, which helps underscore the need to increase awareness about the ethical pitfalls of AI technologies in the complex field of human emotions.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 4","pages":"417 - 430"},"PeriodicalIF":2.9,"publicationDate":"2022-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00237-y.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41165365","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-12-01DOI: 10.1007/s41649-022-00235-0
Graeme T. Laurie
{"title":"Promoting Dialogue through Diversity in Bioethics","authors":"Graeme T. Laurie","doi":"10.1007/s41649-022-00235-0","DOIUrl":"10.1007/s41649-022-00235-0","url":null,"abstract":"","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 1","pages":"1 - 3"},"PeriodicalIF":2.9,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00235-0.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10845856","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-11-16DOI: 10.1007/s41649-022-00233-2
Muhammad Faiq Mohd Zailani, Mohammad Naqib Hamdan, Aimi Nadia Mohd Yusof
The use of pig derivatives in medicine is forbidden in Islamic law texts, despite the fact that certain applications offer medical advantages. Pigs can be one of the best human organ hosts; therefore, using human–pig chimeras may generate beneficial impact in organ transplantation, particularly in xenotransplantation. In Islam, medical emergencies may allow some pig-based treatments and medical procedures to be employed therapeutically. However, depending on the sort of medical use, emergency situation might differ. Using Islamic legal maxim as bioethical framework, the purpose of this study is to examine the use of pigs for the purpose of human–pig chimeric transplant from the perspective of Islamic bioethics. According to the findings, chimeric organ transplantation using pigs should only be done in emergency situations.
{"title":"Human–Pig Chimeric Organ in Organ Transplantation from Islamic Bioethics Perspectives","authors":"Muhammad Faiq Mohd Zailani, Mohammad Naqib Hamdan, Aimi Nadia Mohd Yusof","doi":"10.1007/s41649-022-00233-2","DOIUrl":"10.1007/s41649-022-00233-2","url":null,"abstract":"<div><p>The use of pig derivatives in medicine is forbidden in Islamic law texts, despite the fact that certain applications offer medical advantages. Pigs can be one of the best human organ hosts; therefore, using human–pig chimeras may generate beneficial impact in organ transplantation, particularly in xenotransplantation. In Islam, medical emergencies may allow some pig-based treatments and medical procedures to be employed therapeutically. However, depending on the sort of medical use, emergency situation might differ. Using Islamic legal maxim as bioethical framework, the purpose of this study is to examine the use of pigs for the purpose of human–pig chimeric transplant from the perspective of Islamic bioethics. According to the findings, chimeric organ transplantation using pigs should only be done in emergency situations.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 2","pages":"181 - 188"},"PeriodicalIF":2.9,"publicationDate":"2022-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00233-2.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9320457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-11-14DOI: 10.1007/s41649-022-00232-3
Miguel Angel Ramiro Avilés, Íñigo De Miguel Beriain
Despite the availability of safe vaccines against SARS-CoV-2, some people will remain vulnerable because they will not be vaccinated. Who are these non-vaccinated people? We can distinguish two groups: (i) persons who cannot be vaccinated for clinical reasons and who, despite having been vaccinated, have not achieved immunity; (ii) persons who voluntarily refuse to get vaccinated. These groups have in common an immune system that will make them vulnerable to COVID-19. The reasons for their vulnerability and the ethical judgment they deserve are different; the solutions offered to them are also different. In the case of those who voluntarily avoid vaccination, States are not compromised to introduce new protective policies. In the case of people who remain involuntarily vulnerable, instead, the response should be articulated on the same rules and principles that inform the social model of disability because they will live with an organic disability.
{"title":"COVID-19, the Immune System, and Organic Disability","authors":"Miguel Angel Ramiro Avilés, Íñigo De Miguel Beriain","doi":"10.1007/s41649-022-00232-3","DOIUrl":"10.1007/s41649-022-00232-3","url":null,"abstract":"<div><p>Despite the availability of safe vaccines against SARS-CoV-2, some people will remain vulnerable because they will not be vaccinated. Who are these non-vaccinated people? We can distinguish two groups: (i) persons who cannot be vaccinated for clinical reasons and who, despite having been vaccinated, have not achieved immunity; (ii) persons who voluntarily refuse to get vaccinated. These groups have in common an immune system that will make them vulnerable to COVID-19. The reasons for their vulnerability and the ethical judgment they deserve are different; the solutions offered to them are also different. In the case of those who voluntarily avoid vaccination, States are not compromised to introduce new protective policies. In the case of people who remain involuntarily vulnerable, instead, the response should be articulated on the same rules and principles that inform the social model of disability because they will live with an organic disability.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 3","pages":"283 - 305"},"PeriodicalIF":2.9,"publicationDate":"2022-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00232-3.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9740732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-11-14DOI: 10.1007/s41649-022-00231-4
Joanna Osiejewicz, Dmytro M. Zherlitsyn, Svitlana M. Zadorozhna, Oleksii V. Tavolzhanskyi, Maryna O. Dei
The application of the latest technologies in biology and medicine has brought them to a qualitatively new level of possibilities. Worldwide, biobanking is actively developing through the creation of biobanks of various types and purposes, whose resources are used to solve therapeutic or scientific problems. Legal science remains an open question concerning the boundary that runs between the right to data protection and the scope of disclosure of data needed for medical purposes. In this article, the author considers peculiarities of data processing in the context of biobanking activity on the example of Austria and its national legislation. In addition, the article reveals features of the approaches of the European Court of Human Rights (ECtHR) and the Council of Europe to the issue of biobanking in general, its characteristics in the context of data, and legal regulation of this phenomenon in the national law of states. The author devoted an important part of the study to the role of Austria’s experience in the context of data processing for scientific purposes and the development of biobanking for a number of other European states. The aim of the article is to analyze the Austrian legislation on data processing for scientific research and biobanking, the attitude of the Council of Europe to this phenomenon, and the practice of the ECtHR, as well as to consider the impact of the current world situation on these activities. The leading method of research used in the article is the formal-legal method. The article analyzes the Austrian law in the context of data processing in medical research, the relationship of the specifics of personal data protection, and the need to disclose them for scientific purposes. The author pays special attention to the influence of Austrian law on the legislation of other countries, which is reflected in the conclusions to the article. In addition, based on an analysis of the application of the Austrian experience to the legislation of Poland and Ukraine, the author points out the necessary changes that should be made in the laws of these countries.
生物和医学领域最新技术的应用使生物和医学的发展达到了一个质的飞跃。在世界范围内,通过建立各种类型和目的的生物银行,生物银行正在积极发展,其资源被用于解决治疗或科学问题。关于数据保护权与医疗目的所需数据披露范围之间的界限,法律科学仍是一个未决问题。在本文中,作者以奥地利及其国家立法为例,探讨了生物银行活动中数据处理的特殊性。此外,文章还揭示了欧洲人权法院(ECtHR)和欧洲委员会(Council of Europe)对生物银行问题的一般处理方式、其在数据方面的特点以及各国国内法对这一现象的法律规范。作者将研究的重要部分放在了奥地利在为科学目的处理数据方面的经验所起的作用以及其他一些欧洲国家生物银行的发展上。文章旨在分析奥地利关于科学研究数据处理和生物银行的立法、欧洲委员会对这一现象的态度和欧洲人权法院的做法,并考虑当前世界形势对这些活动的影响。文章采用的主要研究方法是形式-法律方法。文章分析了奥地利在医学研究数据处理方面的法律、个人数据保护的具体内容与出于科学目的披露这些数据的必要性之间的关系。作者特别关注奥地利法律对其他国家立法的影响,这一点在文章的结论中有所体现。此外,在分析奥地利经验在波兰和乌克兰立法中的应用的基础上,作者指出了这些国家的法律应做出的必要修改。
{"title":"National Regulation on Processing Data for Scientific Research Purposes and Biobanking Activities: Reflections on the Experience in Austria","authors":"Joanna Osiejewicz, Dmytro M. Zherlitsyn, Svitlana M. Zadorozhna, Oleksii V. Tavolzhanskyi, Maryna O. Dei","doi":"10.1007/s41649-022-00231-4","DOIUrl":"10.1007/s41649-022-00231-4","url":null,"abstract":"<p>The application of the latest technologies in biology and medicine has brought them to a qualitatively new level of possibilities. Worldwide, biobanking is actively developing through the creation of biobanks of various types and purposes, whose resources are used to solve therapeutic or scientific problems. Legal science remains an open question concerning the boundary that runs between the right to data protection and the scope of disclosure of data needed for medical purposes. In this article, the author considers peculiarities of data processing in the context of biobanking activity on the example of Austria and its national legislation. In addition, the article reveals features of the approaches of the European Court of Human Rights (ECtHR) and the Council of Europe to the issue of biobanking in general, its characteristics in the context of data, and legal regulation of this phenomenon in the national law of states. The author devoted an important part of the study to the role of Austria’s experience in the context of data processing for scientific purposes and the development of biobanking for a number of other European states. The <i>aim</i> of the article is to analyze the Austrian legislation on data processing for scientific research and biobanking, the attitude of the Council of Europe to this phenomenon, and the practice of the ECtHR, as well as to consider the impact of the current world situation on these activities. The leading method of research used in the article is the formal-legal method. The article analyzes the Austrian law in the context of data processing in medical research, the relationship of the specifics of personal data protection, and the need to disclose them for scientific purposes. The author pays special attention to the influence of Austrian law on the legislation of other countries, which is reflected in the conclusions to the article. In addition, based on an analysis of the application of the Austrian experience to the legislation of Poland and Ukraine, the author points out the necessary changes that should be made in the laws of these countries.</p>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"16 1","pages":"47 - 63"},"PeriodicalIF":1.3,"publicationDate":"2022-11-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10776507/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84796585","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-11-10DOI: 10.1007/s41649-022-00230-5
Walter Veit
I applaud recent improvements upon previous guidelines for the assessment of pain in non-human species and the application of their framework towards decapod crustaceans. Rather than constituting a mere intermediate solution between the scientific difficulty of settling questions of animal consciousness and the need for a framework for the purposes of animal welfare legislation, I will argue that the longer lists of criteria for animal sentience should make us realize that animal sentience is a multi-dimensional phenomenon that must be studied with a plethora of methods in order to assess its diversity across the tree of life.
{"title":"Confidence Levels or Degrees of Sentience?","authors":"Walter Veit","doi":"10.1007/s41649-022-00230-5","DOIUrl":"10.1007/s41649-022-00230-5","url":null,"abstract":"<div><p>I applaud recent improvements upon previous guidelines for the assessment of pain in non-human species and the application of their framework towards decapod crustaceans. Rather than constituting a mere intermediate solution between the scientific difficulty of settling questions of animal consciousness and the need for a framework for the purposes of animal welfare legislation, I will argue that the longer lists of criteria for animal sentience should make us realize that animal sentience is a multi-dimensional phenomenon that must be studied with a plethora of methods in order to assess its diversity across the tree of life.</p></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 1","pages":"93 - 97"},"PeriodicalIF":2.9,"publicationDate":"2022-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00230-5.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10564589","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-11-08DOI: 10.1007/s41649-022-00229-y
Amnah Azahar, Aimi Nadia Mohd Yusof, Zahir Izuan Azhar
Abstract
Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an in-depth interview with the key informants was conducted in Klang Valley. Based on the interviews, broad consent is the main approach used in obtaining informed consent in biobanking for research in Malaysia and five major ethical challenges were identified. These challenges include the informants’ opinion on the current informed consent approach, understanding participants’ rights, the role of the research ethics committee, biobanking governance in Malaysia, and informants’ knowledge and awareness. In summary, there is a lack of understanding among those involved in biobanking on the ethical, legal, and social aspects of biobanking for research in Malaysia.
{"title":"A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research","authors":"Amnah Azahar, Aimi Nadia Mohd Yusof, Zahir Izuan Azhar","doi":"10.1007/s41649-022-00229-y","DOIUrl":"10.1007/s41649-022-00229-y","url":null,"abstract":"<div><h2>Abstract\u0000</h2><div><p>Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an in-depth interview with the key informants was conducted in Klang Valley. Based on the interviews, broad consent is the main approach used in obtaining informed consent in biobanking for research in Malaysia and five major ethical challenges were identified. These challenges include the informants’ opinion on the current informed consent approach, understanding participants’ rights, the role of the research ethics committee, biobanking governance in Malaysia, and informants’ knowledge and awareness. In summary, there is a lack of understanding among those involved in biobanking on the ethical, legal, and social aspects of biobanking for research in Malaysia.</p></div></div>","PeriodicalId":44520,"journal":{"name":"Asian Bioethics Review","volume":"15 2","pages":"141 - 154"},"PeriodicalIF":2.9,"publicationDate":"2022-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41649-022-00229-y.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9279483","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}