When information is the treatment? Precision medicine in healthcare

2019 ◽  
Vol 33 (3) ◽  
pp. 120-125
Author(s):  
Michael Beauvais ◽  
Bartha Maria Knoppers
Keyword(s):  
Precision Medicine ◽  
Conventional Medicine ◽  
Healthcare Management ◽  
Court Cases ◽  
Informational Needs ◽  
Data Intensive ◽  
Privacy Law ◽  
Privacy Laws ◽  
New Challenges ◽  
Regulatory Barriers

Profoundly more data-intensive than conventional medicine, precision medicine’s distinctive informational needs present new challenges for healthcare management. Data protection and privacy law are key determinants in precision medicine’s future. This article examines legal and regulatory barriers to the incorporation of precision medicine into healthcare. Specific attention is paid to analyzing recent health privacy laws, court cases, and medical device regulations. Considering the challenges identified, recommendations and guidance are crafted for health leaders with reference to domestic and international initiatives.

scholarly journals Swarm Learning for decentralized and confidential clinical machine learning

Nature ◽  
2021 ◽  
Author(s):  
Stefanie Warnat-Herresthal ◽  
◽  
Hartmut Schultze ◽  
Krishnaprasad Lingadahalli Shastry ◽  
Sathyanarayanan Manamohan ◽  
...  
Keyword(s):  
Machine Learning ◽  
Precision Medicine ◽  
Distributed Data ◽  
X Ray ◽  
Uniform Distributions ◽  
Privacy Laws ◽  
Data Owner ◽  
Machine Learning Approach ◽  
Chest X Ray ◽  
Privacy Legislation

AbstractFast and reliable detection of patients with severe and heterogeneous illnesses is a major goal of precision medicine1,2. Patients with leukaemia can be identified using machine learning on the basis of their blood transcriptomes3. However, there is an increasing divide between what is technically possible and what is allowed, because of privacy legislation4,5. Here, to facilitate the integration of any medical data from any data owner worldwide without violating privacy laws, we introduce Swarm Learning—a decentralized machine-learning approach that unites edge computing, blockchain-based peer-to-peer networking and coordination while maintaining confidentiality without the need for a central coordinator, thereby going beyond federated learning. To illustrate the feasibility of using Swarm Learning to develop disease classifiers using distributed data, we chose four use cases of heterogeneous diseases (COVID-19, tuberculosis, leukaemia and lung pathologies). With more than 16,400 blood transcriptomes derived from 127 clinical studies with non-uniform distributions of cases and controls and substantial study biases, as well as more than 95,000 chest X-ray images, we show that Swarm Learning classifiers outperform those developed at individual sites. In addition, Swarm Learning completely fulfils local confidentiality regulations by design. We believe that this approach will notably accelerate the introduction of precision medicine.

Privacy and Identity in a Networked World

2011 ◽  
pp. 1-18 ◽  
Author(s):  
Bradley T. Tennis
Keyword(s):  
Social Interaction ◽  
Information Technologies ◽  
Personal Information ◽  
Information Age ◽  
Professional Lives ◽  
Digital Information ◽  
Ordinary People ◽  
Public And Private ◽  
Privacy Law ◽  
Privacy Laws

Digital information technologies have opened up fantastic new opportunities for ordinary people to both stand atop a virtual soapbox and reach millions and to participate in new forums for social interaction. However, as users conduct more and more of their personal and professional lives online, the distinction between public and private that has underlain the development of privacy law to date has begun to blur. While some traditional regulatory tools have proven adaptable, the ever increasing ability to collect and analyze that electronic information suggests that the assumptions and policy considerations underlying privacy laws must be reexamined. Old dividing lines between public and private forums cannot be readily transported into the digital realm. Instead, privacy regulations in the information age should protect the ability for users of online services to control the dissemination of their personal information and compartmentalize different aspects of their online conduct.

scholarly journals Protecting health privacy even when privacy is lost

2019 ◽  
Vol 46 (11) ◽  
pp. 768-772 ◽  
Author(s):  
T J Kasperbauer
Keyword(s):  
Health System ◽  
Precision Medicine ◽  
Health Information ◽  
Health Systems ◽  
Personal Information ◽  
Health Data ◽  
Protect Health Information ◽  
Alternative Strategies ◽  
Data Intensive ◽  
Significant Control

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of privacy. This paper argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system.

scholarly journals Regulatory barriers to the advancement of precision medicine

2016 ◽  
Vol 1 (3) ◽  
pp. 319-329 ◽  
Author(s):  
David Pettitt ◽  
James Smith ◽  
Nick Meadows ◽  
Zeeshaan Arshad ◽  
Anna Schuh ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Regulatory Barriers

scholarly journals Chinese Privacy Law: A Practitioner's Guide to Current Regulations, Future Trends & Business Applications

2017 ◽  
Author(s):  
Tiffany Li ◽  
Zhou Zhou
Keyword(s):  
Business Case ◽  
Economic Power ◽  
Future Trends ◽  
Chinese Market ◽  
Close Attention ◽  
Privacy Law ◽  
Business Applications ◽  
Historical Factors ◽  
Privacy Laws ◽  
Or Organization

The business case for understanding Chinese privacy law is clear. With China’s growing economic power and large consumer base, any international company seeking to profit from consumers in the region should expend resources on understanding how best to succeed in the Chinese market. This means that privacy officers must pay close attention to how privacy law is developing in China, both to keep up with current developments and to stay ahead of the curve by proactively implementing strategic policies.This Article provides a basic privacy practitioner’s guide to privacy law in China. First, the Article overviews the basic status of privacy laws and regulations in China. Second, the Article delves into the cultural and historical factors that may influence the development and application of Chinese privacy law. Finally, the Article offers practical lessons and hypothetical case studies for how to proactively help your company or organization succeed in China.

Industry Unbound

2021 ◽  
Author(s):  
Ari Ezra Waldman
Keyword(s):  
Personal Information ◽  
Corporate Strategies ◽  
Privacy Law ◽  
Privacy Laws ◽  
The Law

In Industry Unbound, Ari Ezra Waldman exposes precisely how the tech industry conducts its ongoing crusade to undermine our privacy. With research based on interviews with scores of tech employees and internal documents outlining corporate strategies, Waldman reveals that companies don't just lobby against privacy law; they also manipulate how we think about privacy, how their employees approach their work, and how they weaken the law to make data-extractive products the norm. In contrast to those who claim that privacy law is getting stronger, Waldman shows why recent shifts in privacy law are precisely the kinds of changes that corporations want and how even those who think of themselves as privacy advocates often unwittingly facilitate corporate malfeasance. This powerful account should be ready by anyone who wants to understand why privacy laws are not working and how corporations trap us into giving up our personal information.

scholarly journals General-Purpose Privacy Regulation and Translational Genomics

2020 ◽  
Vol 48 (1) ◽  
pp. 142-150
Author(s):  
William McGeveran ◽  
Caroline Schmitz
Keyword(s):  
Genetic Data ◽  
General Purpose ◽  
Genetic Privacy ◽  
Privacy Regulation ◽  
Translational Genomics ◽  
Privacy Law ◽  
Privacy Laws ◽  
New Generation

At one time, specialized health privacy laws represented the bulk of the rules regulating genetic privacy, Today, however, as both the field of genomics and the content of privacy law change rapidly, a new generation of general-purpose privacy laws may impose new restrictions on collection, storage, and disclosure of genetic data. This article surveys these laws and considers implications.

scholarly journals Traditional Chinese Medicine and Colorectal Cancer: Implications for Drug Discovery

2021 ◽  
Vol 12 ◽  
Author(s):  
Qiang Sun ◽  
Man He ◽  
Meng Zhang ◽  
Sha Zeng ◽  
Li Chen ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Chinese Medicine ◽  
Traditional Chinese Medicine ◽  
Precision Medicine ◽  
Conventional Medicine ◽  
Preclinical Studies ◽  
Human Colorectal Cancer ◽  
Active Ingredients ◽  
Clinical Utilization ◽  
Underlying Mechanisms

As an important part of complementary and alternative medicine, traditional Chinese medicine (TCM) has been applied to treat a host of diseases for centuries. Over the years, with the incidence rate of human colorectal cancer (CRC) increasing continuously and the advantage of TCM gradually becoming more prominent, the importance of TCM in both domestic and international fields is also growing with each passing day. However, the unknowability of active ingredients, effective substances, and the underlying mechanisms of TCM against this malignant tumor greatly restricts the translation degree of clinical products and the pace of precision medicine. In this review, based on the characteristics of TCM and the oral administration of most ingredients, we herein provide beneficial information for the clinical utilization of TCM in the prevention and treatment of CRC and retrospect the current preclinical studies on the related active ingredients, as well as put forward the research mode for the discovery of active ingredients and effective substances in TCM, to provide novel insights into the research and development of innovative agents from this conventional medicine for CRC treatment and assist the realization of precision medicine.

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