Why hire a privacy consultant?

As a privacy consultant, I:

• examine the privacy implications of technology
• conduct research on government data handling activities
• develop standards for fair information practices
• present workshops on health data confidentiality and identity theft
• make presentations on such topics as 'data mining' and surveillance in a time of terrorism.

What is privacy and why is it important?

Privacy is deeply rooted in ethics, law and personal conduct. Historically, privacy has embodied concepts of autonomy, solitude, dignity, confidentiality, personal control and freedom from unwarranted intrusion.

Privacy is not specifically mentioned in the U.S. Constitution. It was first defined by Samuel Warren and Louis Brandeis in an 1890 Harvard Law Review article as the right “to be left alone.” Years later, Brandeis as a Supreme Court Justice expanded that definition claiming privacy to be the “most comprehensive of rights and the right most valued by civilized man” ((Olmstead v. United States, 277 US 438 (1928)).

In the 20th century privacy protections have been enacted in a piecemeal fashion. They range from rights of reproduction and contraception to protections for video rentals and library materials. Although Congress has resisted enacting a comprehensive right of personal or data privacy, recently it passed legislation enhancing medical and financial privacy. These laws are commonly known as HIPAA and Gramm-Leach-Bliley. While far from perfect, both laws allow individuals to exert some control over the release and sharing of their own sensitive information.

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Issues of Involvement

Computer ethics

Computer ethics is an area of inquiry centered at the intersection of personal conduct and use of technology. Ethical issues associated with computing touch on notions of honesty, accountability, fairness, trust and the potential for harm. Therefore, the goal of computer ethics is to introduce tools, techniques and problemsolving skills designed to enhance social responsibility, promote information stewardship and discourage improper or illegal conduct in an electronic environment.

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Medical privacy

The computerization and commoditization of medical information have contributed to the growth of three patient concerns:

• the sharing of medical information with government, law enforcement, marketers and other outside parties
• the tracking of health outcomes and medication use over distance and time
• the erosion of informed voluntary patient consent.

These concerns center on the sanctity of the doctor-patient relationship and the time-honored concept of medical confidentiality. Without patient trust and openness, medical care may be compromised. While recent changes in America’s system of health delivery have focused on efficiency and cost containment, these values must not burden patients with fears of exposure, stigmatization and harm caused by breaches of medical privacy.

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Financial privacy

Recent federal legislation provides customers limited privacy protections for their financial information. The Financial Services Modernization Act (commonly known as Gramm-Leach-Bliley), enacted in 1999, prohibits a financial institution, credit card company or brokerage firm from sharing or selling certain sensitive information to select outside parties. Unfortunately, the act does not prohibit the sharing of customer information with authorized affiliates, partners or subcontactors. Therefore it is imperative that customers opt-opt of the sale or release of their own financial information whenever possible. Customers who take the time to complete and return an opt-out form reduce the chance that their financial information will be used for marketing and other unrelated purposes.

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Consumer privacy

Issues associated with consumer privacy center on a growing set of concerns that deal with (a) identity theft and fraud, (b) sale of personal information, (c) unregulated marketing practices and spam, (d) data surveillance over distance and time and (e) proliferation of consumer profiling through 'data mining'.

Because of such concerns, over 57 million Americans have signed up for the national Do-Not-Call List; 80% of Wisconsinites have signed up for the state Do-Not-Call List. An estimated 50% of Californians now have an unlisted phone number. Over three million Americans who annually become victims of identity theft must go to extreme lengths to clear their good name. Clearly, issues of consumer privacy have moved to the front burner of public debate.

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Internet privacy

Tracking Internet use, assessing e-mails, selling account profiles and breaches of security all form a core set of concerns relating to Internet privacy. Initially, these concerns focused on commercial data brokers and consumer profilers. Since 9/11, however, public attention has shifted to the government due to efforts by the Departments of Justice and Homeland Security to intercept and monitor electronic communications and other Internet activities.

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