PHIL 235 Lecture Notes - Lecture 4: Genetic Privacy, Medical Record, Life Insurance
11 May 2018
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Lesson 4 -Notes 4.1
Management of Medical Information
• Privacy= the individual has an inherent right to control both (a) the access to
viewing and touching intimate aspects of their bodies and (b) the revelation
of intimate, personal information according to their own discretion
• Privacy is divided into 4 types relevant to health care ethics
1. Bodily privacy= protects the individual against unconsentual invasive
procedures such as touching the body, viewing intimate areas of the
body, or performing genetic or drug tests on body tissue or fluid
2. Information privacy= Establishes rules governing the collection and
handling of personal data, including medical records and genetic
information
3. Communication privacy= ensures the privacy of telephone and other
certain privileged types of verbal conversations, such as between hcp
and patient, and written communications such as mail and email
4. Territorial privacy= sets strict limits on the intrusion into one’s
physical space in both private and public, including domestic, work,
and other environments.
• Bodily and information privacy are important to patients, and it is only bc of the
HCP obligation of protection confidentiality that patients may feel comfortable
enough to disclose, thoroughly and accurately, all the info necessary to diagnose
& treat their medical condition.
• Confidentiality= the obligation of HCPs to maintain the privacy of their patients
by keeping the info patients disclose to them confidential; confidentiality is not
absolute, it may be breached in order to keep the individual from harming herself
or other
• The HCP’s responsibilities are primarily but not exclusively to the patient:
the wellbeing of society will override patients’ interests in dignity, privacy,
and confidentiality.
• The risk of discrimination is particularly strong when the information
concerns genetics. Information about a patient’s DNA also provides clues
about the health and future wellbeing of the patient’s parents, siblings, and
offspring. This information can be used to exclude patients and their
relatives from jobs, supplementary health insurance, life insurance, and so
on.
• The problem is not limited to old-fashioned paper files. Almost all medical
facilities— from hospitals to family clinics—now keep electronic files on
their patients. But computer systems can simply “go down,” limiting access
to vital information when it’s needed most. They may be hacked, and
computers and files may be stolen.
• Legislation on confidentiality is a provincial matter, which means that there
are important variations in approach across Canada.
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• In Quebec, the act that guarantees “the protection of personal information
in the private sector” covers health information in the private sector as well
• Patricia Roche and George Annas consider the very modern problem of
genetic privacy in their article about DNA testing and banking of samples
and information→ genetic privacy is importantly different from the privacy
of other medical information because the information obtained may be
directly relevant to the quality and even length of someone else’s life—the
person or people who share that relevant segment of the genome with you,
your siblings, parents, offspring, or other blood relatives →
• one’s genetic privacy may be morally breached in order to protect the
well-being of family members who quite likely share the same portion of
the genome.
• A woman who has been diagnosed with the BRcA1 mutation for breast
cancer, but refuses to tell her adult daughter about her own risk at this time,
Lacroix et al. deter- mine that the benefits of disclosure to third parties may
outweigh the hcp’s obligation to maintain confidentiality.
• Chapter 3.3 (in this lesson 4) → Lipkin argues that conveying the truth
completely to patients is both impossible and undesirable: they do not know
enough to understand their medical situation, and in many instances they do
not want to know the truth→ deception may be justified in doctor- patient
relations so long as it is to the benefit of the patient.
• Thomasma takes a slightly different view. he identifies truth as a right, a
utility, and a kindness for the patient, and argues that truth-telling is
therefore a compelling obligation that hcps should take as the standard. he
concedes, however, that since truth is only a secondary good, it may be set
aside to promote the survival of the patient or the community or to protect a
patient at a particular time when she is unable to absorb the full impact of
the truth and when truth- telling might in fact cause harm.
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Lesson notes -4.2
Privacy: Human Rights, Public Policy, and Law
Why a report on privacy and the Confidentiality of Health Information?
• Over 20 years into the HIV/AIDS epidemic, a climate of fear and stigma
continues to surround HIV/AIDS
• The rapid growth of technology in the last decade has increased the ability
of health care professionals, hospitals, government, insurance companies,
and employers to both collect and transmit personal information. As greater
quantities of information are collected and transmitted to a greater number
of people, the ability of people living with HIV/AIDS to control the
disclosure of their health information has been eroded.
• People living with aids have the right to their privacy, and confidentiality
Privacy: Human Rights, Public Policy, and Law
• According to one Gallup survey, 84 per cent of respondents ex- pressed
concern that there are insufficient protections to ensure that health
information is not disclosed with- out their consent.
• Similar findings appeared in a mid- 1990s survey that found that 76 per
cent of Canadians believe that their privacy is not adequately protected.
• It was reported in this latter survey that almost one in five Canadians have
experienced what they consider to be improper disclosure of their personal
medical information.
The relationship between the Right to Provacy, the Duty of Confidentiality, and the rule
of privilege
• In the legal sense, privacy is a right.
• The right to privacy not only requires governments to abstain from
interfering with the privacy of individuals, but also imposes a duty on
governments to take measures to protect this right
• The right to privacy is based on the notion of a zone of personal freedom
that cannot be interfered with by public authorities or third parties
• The freedom covered by privacy rights can be subdivided into:
1. Physical zones of privacy= takes into account respect for a person’s
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