scholarly journals Innovative Commercial and Private Genetic Testing Raises Privacy and Confidentiality Concerns

2018 ◽  
pp. 31-33
Author(s):  
Syeda Masooma Zaidi
Keyword(s):  
Genetic Testing ◽  
Personal Information ◽  
Personal Data ◽  
Third Party ◽  
Sensitive Information ◽  
Test Results ◽  
Direct To Consumer ◽  
Client Data ◽  
The Right ◽  
Privacy And Confidentiality

Obtaining information about your genes can be as easy as swabbing your cheek for DNA testing. Companies that offer direct-to-consumer genetic testing with saliva have the authority to collect and share personal data as well as test results from their clients. However, patients want their personal information to be protected and although these companies ask for consent before sharing information with third-party sources, companies have the right to use client data to initiate research or improve their business. Genetic testing companies need to respect their clients and understand that they are paying for a service which deals with sensitive information that individuals may not want collected and stored.

scholarly journals Sales, Acquisitions, and Mergers of Direct-to-Consumer Genetic Testing Companies

2021 ◽  
Vol 8 (2) ◽  
pp. 403-421
Author(s):  
Alyssa K. McLeod
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Personal Information ◽  
Personal Data ◽  
The United States ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Testing Company ◽  
Privacy Risks ◽  
A Company

Direct-to-consumer genetic tests have become increasingly popular in the United States within the last few years. However, these tests pose many risks to the consumer, most notably privacy risks. A subset of these privacy risks involves the issue of company mergers, acquisitions, and sales. Many companies in the direct-to-consumer genetic testing market have privacy policies that contain a variation of a “business transfer” clause. These clauses specify that in the event the company goes through a business transition such as a sale, merger, or acquisition, the consumer’s personal information—including the consumer’s DNA—will be among the assets transferred. This Article explores the risks associated with these business transfer clauses as they relate to the consumer, and presents a solution to mitigate said risks. The solution lies in FTC v. Toysmart, wherein a toy company that filed for bankruptcy was restricted in selling its assets—which included its customers’ personal data— only to entities with the same interests as the toy company. This Article urges that the default interpretation standard of business transfer clauses track similarly such that a direct-to-consumer genetic testing company may only be sold to, merged with, or acquired by a company with the same or like interests.

The Right to Privacy and the Protection of Personal Data in a Digital Era and the Age of Information

2012 ◽  
pp. 34-45
Author(s):  
William Bülow ◽  
Misse Wester
Keyword(s):  
Empirical Evidence ◽  
Personal Information ◽  
Personal Data ◽  
Modern Society ◽  
Right To Privacy ◽  
Policy Makers ◽  
The Right To Privacy ◽  
Digital Era ◽  
The Individual ◽  
The Right

As information technology is becoming an integral part of modern society, there is a growing concern that too much data containing personal information is stored by different actors in society and that this could potentially be harmful for the individual. The aim of this contribution is to show how the extended use of ICT can affect the individual’s right to privacy and how the public perceives risks to privacy. Three points are raised in this chapter: first, if privacy is important from a philosophical perspective, how is this demonstrated by empirical evidence? Do individuals trust the different actors that control their personal information, and is there a consensus that privacy can and should be compromised in order to reach another value? Second, if compromises in privacy are warranted by increased safety, is this increased security supported by empirical evidence? Third, the authors will argue that privacy can indeed be a means to increase the safety of citizens and that the moral burden of ensuring and protecting privacy is a matter for policy makers, not individuals. In conclusion, the authors suggest that more nuanced discussion on the concepts of privacy and safety should be acknowledged and the importance of privacy must be seen as an important objective in the development and structure of ICT uses.

RFID Technology and its Impact on Privacy

2009 ◽  
pp. 89-107 ◽  
Author(s):  
Tatiana-Eleni Sinodinou
Keyword(s):  
Data Processing ◽  
Personal Information ◽  
Personal Data ◽  
Legal Framework ◽  
Special Focus ◽  
Information Transparency ◽  
Rfid Tag ◽  
Rfid System ◽  
The Individual ◽  
The Right

The present chapter explores privacy issues posed by the use of RFID systems and applications. The existing legal framework for data protection is analyzed in order to discover how general privacy safeguarding principles should be applied in the case of RFIDs, with special focus on the main areas which are going to experience widespread use of such applications. The structure of the chapter is based on a chronological order which follows the consecutive phases of contact and interaction between the individual and the RFID tag. The implementation of a tag to a product or in the human body establishes the first point of contact of the individual with the RFID tag. This stage of data processing is examined in the first part of the chapter. In more particular, this part deals with the application of general principles of fair processing, such as information transparency, the debate about the necessity to require the prior consent of the individual (possible opt-in and opt-out solutions) and the precondition of a clearly defined purpose of the data processing. The symbiosis of the person with the tag is examined in the second part. Indeed, privacy concerns are equally significant during the phase of processing of personal information, even if processing is conducted lawfully, either based on the legal ground of the individual’s consent or justified on another legal basis. The requirement of data quality and the obligation to secure the RFID system against unauthorized interceptions or alterations of data by third parties constitute essential guarantees of fair data processing. Privacy protection in the activation phase of the tag is also ensured by the obligation to inform the tagged individual every time a reading takes place and by the right to verify the accuracy of the tag data, whether stored from the beginning or added at a later date. Finally, the last part of the chapter examines the legal regime of separation between the person and the tag. This phase refers to the termination of the processing either by act of the data subject or by act of the RFID system controller. The focus is given to the exercise of the right to object to the processing of personal data through RFID devices. In this context practical solutions, such as the “tag kill” or “tag sleep” command should be taken into consideration in order to the make the exercise of the right to object feasible.

Direct-to-Consumer Genetic Testing: Value and Risk

2020 ◽  
Vol 72 (1) ◽  
Author(s):  
Mary A. Majumder ◽  
Christi J. Guerrini ◽  
Amy L. McGuire
Keyword(s):  
Genetic Testing ◽  
Healthcare Delivery ◽  
Healthcare Providers ◽  
Relevant Information ◽  
Third Party ◽  
Annual Review ◽  
Publication Date ◽  
Direct To Consumer ◽  
Number Of Patients ◽  
Health Related

Although the explosive growth of direct-to-consumer (DTC) genetic testing has moderated, a substantial number of patients are choosing to undergo genetic testing outside the purview of their regular healthcare providers. Further, many industry leaders have been expanding reports to cover many more genes, as well as partnering with employers and others to expand access. This review addresses continuing concerns about DTC genetic testing quality, psychosocial impact, integration with medical practice, effects on the healthcare system, and privacy, as well as emerging concerns about third-party interpretation services and non-health-related uses such as investigative genetic genealogy. It concludes with an examination of two possible futures for DTC genetic testing: merger with traditional modes of healthcare delivery or continuation as a parallel system for patient-driven generation of health-relevant information. Each possibility is associated with distinctive questions related to value and risk. Expected final online publication date for the Annual Review of Medicine, Volume 72 is January 27, 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

scholarly journals Silent Listeners: The Evolution of Privacy and Disclosure on Facebook

2013 ◽  
Vol 4 (2) ◽  
Author(s):  
Fred Stutzman ◽  
Ralph Gross ◽  
Alessandro Acquisti
Keyword(s):  
Social Network ◽  
Personal Information ◽  
Social Network Sites ◽  
Personal Data ◽  
Extended Period ◽  
Third Party ◽  
Privacy Concerns ◽  
Trade Offs ◽  
Seeking Behavior ◽  
Over Time

Over the past decade, social network sites have experienced dramatic growth in popularity, reaching most demographics and providing new opportunities for interaction and socialization. Through this growth, users have been challenged to manage novel privacy concerns and balance nuanced trade-offs between disclosing and withholding personal information. To date, however, no study has documented how privacy and disclosure evolved on social network sites over an extended period of time. In this manuscript we use profile data from a longitudinal panel of 5,076 Facebook users to understand how their privacy and disclosure behavior changed between 2005---the early days of the network---and 2011. Our analysis highlights three contrasting trends. First, over time Facebook users in our dataset exhibited increasingly privacy-seeking behavior, progressively decreasing the amount of personal data shared publicly with unconnected profiles in the same network. However, and second, changes implemented by Facebook near the end of the period of time under our observation arrested or in some cases inverted that trend. Third, the amount and scope of personal information that Facebook users revealed privately to other connected profiles actually increased over time---and because of that, so did disclosures to ``silent listeners'' on the network: Facebook itself, third-party apps, and (indirectly) advertisers. These findings highlight the tension between privacy choices as expressions of individual subjective preferences, and the role of the environment in shaping those choices.

scholarly journals Impact of direct-to-consumer genetic testing on Australian clinical genetics services

2020 ◽  
Author(s):  
Michael Millward ◽  
Jane Tiller ◽  
Michael Bogwitz ◽  
Helen Kincaid ◽  
Shelby Taylor ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Genetic Risk ◽  
Online Survey ◽  
Third Party ◽  
Clinical Genetics ◽  
Direct To Consumer ◽  
Risk Estimates ◽  
Genetics Services ◽  
Clinical Genetics Services ◽  
The Impact

AbstractPurposeThe increasing popularity of direct-to-consumer genetic testing (DTCGT) is thought to be creating a burden on clinical genetic health services worldwide. However, no studies have collected recent evidence regarding the extent of this impact in Australia.MethodsWe administered an online survey to Australian clinical genetics services, asking questions related to DTCGT-related referrals received and outcomes over the past 10 years.ResultsEleven publicly-funded clinical genetics services completed the survey, reporting over 100 DTCGT-related referrals. Most referrals (83%) were made by general practitioners seeking interpretation of DTCGT results. More than 30% of referrals related to imputed genetic risk estimates generated from third-party web-based software tools. Services reported low validation rates for DTCGT results (<10%). Procedures for managing DTCGT referrals and granting appointments were variable between services, with most services (8/11) lacking specific procedures.ConclusionOur study helps quantify the impact of DTCGT on clinical genetics services, and highlights the impact of imputed genetic risk estimates generated from third-party software.

scholarly journals To Warn or Not to Warn? Genetic Information, Families, and Physician Liability

2020 ◽  
Vol 8 (1) ◽  
Author(s):  
Jennifer L Gold
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Third Party ◽  
Test Results ◽  
Physician Patient Relationship ◽  
Duty To Warn ◽  
Legal Obligations ◽  
Genetic Test Results ◽  
Physician Liability ◽  
Physician Patient

Genetic testing raises a number of legal issues. Physicians providing genetic testing may be faced with questions related to privacy, confidentiality, and the duty to warn. Because genetic information is by its very nature familial, genetic test results may have implications for others not privy to the particular physician-patient relationship. This can result in a legal and ethical quandary for the treating physician. This paper addresses questions with respect to genetic testing and the legal obligations of physicians. First, can a physician legally breach doctor-patient confidentiality to inform a family member of a genetic risk? Second, does the physician have a duty to warn the interested third party of that risk? And if the physician fails to warn that party, could s/he be found liable? These questions are addressed here in a comparative fashion, examining Canadian (and, where appropriate, American) common law as well as Quebec civil law. The paper concludes that physicians should be liable for the duty to warn in the context of genetic information only when the risk is serious, imminent, and avoidable.

scholarly journals Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility

2021 ◽  
Vol 12 ◽  
Author(s):  
Michael J. S. Beauvais ◽  
Adrian M. Thorogood ◽  
Michael J. Szego ◽  
Karine Sénécal ◽  
M'an H. Zawati ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Personal Information ◽  
Personal Data ◽  
Genomic Data ◽  
Public Institution ◽  
Best Interests ◽  
Legal Rights ◽  
The European Union ◽  
The Right ◽  
Right Of Access

Children with rare and common diseases now undergo whole genome sequencing (WGS) in clinical and research contexts. Parents sometimes request access to their child's raw genomic data, to pursue their own analyses or for onward sharing with health professionals and researchers. These requests raise legal, ethical, and practical issues for professionals and parents alike. The advent of widespread WGS in pediatrics occurs in a context where privacy and data protection law remains focused on giving individuals control-oriented rights with respect to their personal information. Acting in their child's stead and in their best interests, parents are generally the ones who will be exercising these informational rights on behalf of the child. In this paper, we map the contours of parental authority to access their child's raw genomic data. We consider three use cases: hospital-based researchers, healthcare professionals acting in a clinical-diagnostic capacity, and “pure” academic researchers at a public institution. Our research seeks to answer two principal questions: Do parents have a right of access to their child's raw WGS data? If so, what are the limits of this right? Primarily focused on the laws of Ontario, Canada's most populous province, with a secondary focus on Canada's three other most populous provinces (Quebec, British Columbia, and Alberta) and the European Union, our principal findings include (1) parents have a general right of access to information about their children, but that the access right is more capacious in the clinical context than in the research context; (2) the right of access extends to personal data in raw form; (3) a consideration of the best interests of the child may materially limit the legal rights of parents to access data about their child; (4) the ability to exercise rights of access are transferred from parents to children when they gain decision-making capacity in both the clinical and research contexts, but with more nuance in the former. With these findings in mind, we argue that professional guidelines, which are concerned with obligations to interpret and return results, may assist in furthering a child's best interests in the context of legal access rights. We conclude by crafting recommendations for healthcare professionals in the clinical and research contexts when faced with a parental request for a child's raw genomic data.

scholarly journals Security and Confidentiality of the Data using Block Level in Health Care System

2019 ◽  
Vol 8 (2) ◽  
pp. 2947-2951
Keyword(s):  
Rapid Development ◽  
Block Design ◽  
Personal Data ◽  
Third Party ◽  
Easy Access ◽  
Sensitive Information ◽  
User Privacy ◽  
Smart Healthcare ◽  
Block Level ◽  
Balanced Incomplete Block

Nowadays rapid development of cloud computing in smart healthcare system has significantly improved the quality of health. However, data security and user privacy are a major concern for smart healthcare systems. These days any kind of data can be used for malicious purposes. Many harmful entities constantly try to gain access to the personal data of internet users. This data includes sensitive information that doctors store of patients and is often stored using some kind of third party cloud providing service that is not very secure. To take care of this issue, in this paper, Symmetric Balanced Incomplete Block Design (SBIBD) is utilized for key Security so that unauthorized client can’t get access to the data easily. It also allows the patients immediate and easy access to the data using unique user ID. This system makes use of double encryption using Blowfish algorithm to ensure maximum security of data and the concept of block level is used where data is stored using multiple blocks.

scholarly journals No exchange, same pain, no gain: Risk–reward of wearable healthcare disclosure of health personally identifiable information for enhanced pain treatment

2018 ◽  
Vol 25 (4) ◽  
pp. 1675-1691 ◽  
Author(s):  
Stephen Cory Robinson
Keyword(s):  
Chronic Pain ◽  
Health Information ◽  
Pain Treatment ◽  
Personal Information ◽  
Personal Data ◽  
Sensitive Information ◽  
Privacy Management ◽  
Physical And Mental Health ◽  
Communication Privacy Management ◽  
Glucose Levels

Wearable technologies have created fascinating opportunities for patients to treat chronic pain in a discreet, mobile fashion. However, many of these health wearables require patients to disclose sensitive information, including health information (e.g., heart rate, glucose levels) and personal information (location, email, name, etc.). Individuals using wearables for treatment of chronic pain may sacrifice social health elements, including their privacy, in exchange for better physical and mental health. Utilizing communication privacy management, a popular disclosure theory, this article explores the policy and ethical ramifications of patients disclosing sensitive health information in exchange for better health treatment and relief of chronic pain. The article identifies scenarios where a user must disclose information, and what factors motivate or dissuade disclosure, and ultimately the use of a health wearable. Practical implications of this conceptual article include an improved understanding of how and why consumers may disclose personal data to health wearables, and potential impacts for public policy and ethics regarding how wearables and their manufacturers entice disclosure of private health information.

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