An Analysis of Ethics-Based Foundation and Regulatory Issues for Genomic Data Privacy

作     者：Balagurunathan, Yesodhai Sethuraman, Raja Rajeswari 

作者机构：Department of Computer Applications Dr.Mahalingam College of Engineering and Technology Tamil Nadu Pollachi India 

出 版 物：《Journal of The Institution of Engineers (India): Series B》 (J. Inst. Eng. Ser. B)

年 卷 期：2024年第105卷第4期

页      面：1097-1107页

核心收录：

学科分类：0710[理学-生物学] 0831[工学-生物医学工程（可授工学、理学、医学学位）] 0303[法学-社会学] 1205[管理学-图书情报与档案管理] 12[管理学] 1201[管理学-管理科学与工程(可授管理学、工学学位)] 08[工学] 0835[工学-软件工程] 0836[工学-生物工程] 0812[工学-计算机科学与技术（可授工学、理学学位）] 

主　　题：Digital storage 

摘      要：The ethical issues raised by the privacy of bioinformatics data storage are the core of our investigation. The storage, use, and sharing of genomic data raises additional ethical concerns because it is a storehouse of unique and priceless information about a person s genetic composition. In view of the significant effects on autonomy and privacy, it is imperative that the ethical issues be considered and that strong legal and normative frameworks be established. The intrinsic sensitivity of genetic data gives rise to serious privacy and autonomy concerns, highlighting the pressing need to address ethical challenges in the field of genetics. Concerns about data security, permission, and privacy are brought up by the extremely sensitive nature of this information. Healthcare professionals and academics working in the field of genetics have to maintain a careful balance between promoting scientific understanding and upholding human autonomy. While data sharing and collaborative efforts are crucial to the advancement of genetic research, they also rely on strict ethical standards and legal protections to safeguard individuals rights and privacy. The challenges of getting meaningful consent from data contributors are also covered in this work, particularly in view of the various applications and possible consequences of their data. In particular, when working with extremely private material like genetic data, it highlights how crucial it is to defend one s right to privacy and autonomy. The difficulties in obtaining contributors informed consent are examined, and the significance of honest and open communication regarding data usage and sharing is emphasized. The fact that current data protection regulations match and highlight any inadequacies in relation to the preservation of bioinformatics data is an additional factor. Establishing ethical norms and legislative frameworks is necessary to handle the challenges associated with data privacy in business. © The Institut