\n\u201cThe purpose limitation principle, intended to limit the collection of personal information, subject to consent being given for those specific purposes is becoming increasingly difficult to apply in a world of ubiquitous computing and mobile devices.\u201d – Ann Cavoukian, Executive Director of the Privacy and Big Data Institute, Ryerson University.<\/p>\n<\/blockquote>\n
Consent<\/h3>\n
In a discussion about ethics and in a discussion about privacy, consent can mean different things. In ethics, consent refers to the individual consenting to use <\/i>a wearable device. Do they have the cognitive ability to consent to its use? But in a discussion about privacy, consent refers to the individual\u2019s agreement to allow their data to be collected and transmitted.<\/span><\/p>\nInformed consent is difficult to obtain. Individuals do not often read the Terms and Conditions, and the parameters of use written in a manual are typically not composed in a manner that the individual can understand. Individuals using wearable technology simply do not know what is being done with their data. <\/span><\/p>\nPurpose limitation principle and purpose specification<\/h4>\n
\u201cPrivacy is all about using information for the intended purposes that have been consented to for the data subject, and in this case, the elderly individual,\u201d Cavoukian says. This is called the \u201cpurpose limitation principle,\u201d only using the data for its intended purpose that was consented by the individual. <\/span><\/p>\n\u201cThe consumer doesn\u2019t give you data to do whatever the heck you want to do with it,\u201d says Cavoukian. \u201cThey usually give you data for a particular purpose.\u201d This is the notion of purpose specification, the data should be used for an intended purpose. If information is going to be used for another, second purpose, then the developer should return to the individual and get their consent. \u201cObviously that doesn\u2019t happen in the world of wearables at all, and that\u2019s part of the problem.\u201d Data from wearable devices is transmitted from a sensor to a computer server or mobile application. An individual will consent to their data being collected and communicated, because they want to be able to see their progress or read their own statistics. However, this data is often used for a second purpose, for example to inform business statistics or sold to research and insurance companies. <\/span><\/p>\nThere are many unintended consequences that arise from the free floating use of personally identifiable data. \u201cPeople don\u2019t think of the consequences,\u201d says Cavoukian. \u201cWhen information that is intended for one purpose, is used for a myriad of other purposes, no one is thinking of the potential horrors that could arise. That\u2019s one of the biggest problems with not limiting the use of information by design from the outset.\u201d This leads to unintended consequences of wearable surveillance. <\/span><\/p>\n![\"\"](\"http:\/\/cusjc.ca\/agingtech\/wp-content\/uploads\/2016\/01\/Three_Surveillance_cameras-1024x832.jpg\")
<\/p>\n
Wearable surveillance<\/h3>\n
The purpose of wearable technology is to track and profile different variables, such as heart rate, number of steps walked, blood pressure, etc. Many individuals use this information for their own records, or the information is provided to a healthcare professional. But there are other stakeholders who are becoming increasingly interested in this information: health insurance providers and employers for example. <\/span><\/p>\nManulife Financial, an insurance company, offers discounts to U.S. consumers that use fitness trackers. They plan to launch the same program in Canada. While an individual can be incentivized to use wearable technology to lower insurance premiums, there are also negative consequences of this data being available to insurance companies. As included in a MaRS research report,\u00a0Forrester Research concluded, \u201cAs fitness wearables track the activities of more and more employees, for-profit health care systems will both reward adherents to an active and healthy lifestyle … and punish non-adherents.\u201d <\/span><\/p>\n\u201cQuite frankly there’s very little in this world that people can’t find out about you.\u201d – Hugh Judges, Fitbit user. <\/div>\n
Employers are also incentivizing workers to use wearable devices through corporate wellness companies. Sprout is a Canadian corporate wellness company that helps companies to keep their employees healthy and active. They have an employee tracking program that counts everything from activity levels to mental health. <\/span><\/p>\nWhile there are many benefits to quantifying one\u2019s health and finding motivation to be active, these new means of surveillance could be detrimental to the individuals who cannot meet the health or activity levels set out by insurance companies or employers. <\/span><\/p>\n\u201cThis is very very real,\u201d says Cavoukian. \u201cIn the States, you see it all the time. There are all these horror stories.\u201d She says\u00a0<\/span>insurance rates can increase and individuals can be cut off from getting certain services after their wearable data is accessed.<\/span><\/p>\nThe developers<\/h3>\n
The OPC report highlights the role of transparency: there must be transparency in our relationship with the private sector and between the individual and the government. The challenges that these technologies present in the form of privacy risks, while we can speculate on some,\u00a0 <\/span>are difficult to predict in the long-term, states the report. <\/span><\/p>\nThere are many risks associated with privacy, but wearable technology also offers a great opportunity to enhance privacy protection and user autonomy, states the report. When Cavoukian was the Privacy Commissioner, she went on a world tour, talking almost exclusively to engineers about \u201cprivacy by design.\u201d \u201cIt is something I developed many years ago, which is all about embedding the necessary protections that we need, into the design of information technologies and networks infrastructure,\u201d says Cavoukian. <\/span><\/p>\nCavoukian explains that she asked engineers to proactively embed protections directly into the technology so that privacy would become an inherent part of the data architecture. \u201cEvery single engineer, and I spoke to thousands of engineers in California, and Europe, everybody said, \u2018of course we can do that.\u2019 But, they said that the biggest problem is that you have to tell us you want us to do that.\u201d <\/span><\/p>\nThe development of technologies happens in silos. Engineers receive instructions and they write the code. The privacy issues go to another department, that of the Chief Information Officer or the Chief Privacy Officer. There is a disconnect in the information flow. At some point, someone would tell the engineers to implement some sort of privacy solution. \u201cThey would just shake their heads because it was way too late,\u201d says Cavoukian. \u201cYou can\u2019t bolt on a solution after the fact, you have to do it to begin with.\u201d <\/span><\/p>\n\u201cWe have to tell the engineers why it is important to embed privacy protections into technology,\u201d – Ann Cavoukian, Executive Director of the Privacy and Big Data Institute, Ryerson University. <\/div>\n
Cavoukian co-chairs a technology committee with engineering professionals, it is called Privacy by Design for Software Engineers. The committee is attempting to develop the \u201cplaybook\u201d on how to influence and educate engineers and developers about privacy. \u201cThe reality is, that the majority of the role to be played in terms of protecting privacy and data is on the part of the company or organization or government department – whoever is doing the data collection,\u201d Cavoukian says. <\/span><\/p>\nIn addition to embedding privacy in the physical piece of technology, it is incumbent upon the organization to have strong data protection policies says Cavoukian. \u201cTo have policies where not only are they transparent to the consumer or the data subject about what they intend to do with the person\u2019s information, but that they themselves impose some restrictions on what they do with the information.\u201d It\u2019s not just their data, it is the consumer\u2019s data. <\/span><\/p>\nPierre-Alexandre Fournier, CEO Hexoskin <\/div>
\u201cWe have always been very serious about privacy and security, which are two different things,\u201d says\u00a0Fournier. \u201cWhat happens with the data is that you\u2019re wearing the shirts and the electronic device that’s hidden in the shirt records all the data. When you have a smartphone, you can use it to look at your health information and you can use your smartphone to transmit the information in real time to your account which is on one of our servers. Then from there, if you want, you can share it with somebody, but by default, everything is private. So you always have a copy of your information in your shirt, and there’s another copy on the servers. “<\/div><\/div>\n
Paul Shore, Vice President of Health Care of Tractivity <\/div>
\u201cPrivacy is s a big issue both in the development of the software from day one and from an ongoing basis depending on what requests we get from healthcare providers. I will give you a few examples of things that we do to ensure privacy. There are some rudimentary things, we don’t store passwords of our customers. This is becoming typical or a lot of web based software products. We do all sorts of inscriptions, we encrypt the data when it is moving across the internet, we encrypt the data when we store it on our server, we pick server suppliers, we do not use our own servers, we chose the levels of service they provide that have encryptions within. We have all sorts of policies and procedures for how we behave in our office because we have access to the data. For sure it is a big deal. The step channels of\u00a0the patients, you could argue that it\u00a0is not particularly damaging if the world saw how much walking you were doing. One day we may have your blood glucose levels and on and on we go. We could become more sensitive issues. It is good that we have spent a lot of effort setting it up for that. There are other things that we store in our database like name and email address because email address is your account name. Or in the case some of our patients in the U.S. we use medical record number which is a number issued by the provider and they need that – associated to patient name that’s an important thing to protect.\u201d<\/div><\/div>\n
Adrian Chan is a professor at Carleton University in the Department of Computer systems and Engineering. Here, he describes the role of the developer to protect and establish privacy.<\/p>\n