Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age

New developments in medical profiling and online medicine can enable people to take more responsibility for their health and give them increased choice and control. These developments are promised by their providers as leading to a new era of ‘personalised healthcare’.

Our report explores the extent to which medical profiling and online medicine really is leading to healthcare becoming more personalised. The benefits and harms are weighed up, along with the ethical values that come into play. The implications of the ‘consumerisation’ of healthcare are examined. Recommendations for policy are made in a number of specific areas, examples of which are provided below.

Direct-to-consumer personal genetic profiling

• Regulators should request evidence for any claims being made by companies offering direct-to-consumer personal genetic profiling about the clinical value of their tests.
• Government websites should provide information about the risks and benefits of personal genetic profiling, including the relevance for insurance.

Direct-to-consumer body imaging

• Companies that sell body imaging services as a health check using CT, MRI and ultrasound scans should be regulated to ensure they are meeting standards of quality and safety.
• Direct-to-consumer whole body CT imaging should be banned. Part-body CT scans should only take place if it is in the best interests of the customer.
• Government websites should provide information about the risks and benefits of commercial body imaging, including the relevance for insurance.

Online healthcare

• The UK Departments of Health should ensure that high-quality health information is available on their websites. All websites containing health information should seek accreditation from recognised schemes.
• Government healthcare websites should provide clear and prominent information about the risks of buying medicines online and how to identify a registered online pharmacy.
• The Government should set up accreditation schemes for online health record providers to improve transparency and standards on how personal information is stored and used. Providers of these services should seek accreditation from such schemes.