A bill to Make provision to incentivise research and investment into the treatment of rare types of cancer; and for connected purposes.
Be it enacted by the King’s most Excellent Majesty, by and with the advice and consent of the Lords Spiritual and Temporal, and Commons, in this present Parliament assembled, and by the authority of the same, as follows:—
1 Review of law on marketing authorisations¶
2 Secretary of State’s duties as to research¶
In section 1E of the National Health Service Act 2006 (Secretary of State’s duty to facilitate research etc)—(2) The research that the Secretary must facilitate or otherwise promote under subsection (1)(a) includes research into cancers that in the opinion of the Secretary of State are rare cancers. (3) In discharging the duty under subsection (1)(a) in relation to those cancers, the Secretary of State must, in particular, ensure that there are such arrangements in place as the Secretary of State considers appropriate to— (a) enable potential participants in clinical trials to be identified and contacted, and (b) ensure that a person (to be known as “the National Specialty Lead for Rare Cancers”) is appointed with a job description that includes promoting and facilitating research into rare cancers by— (i) providing advice in relation to the design and planning of research, and (ii) facilitating collaboration between interested persons. (4) In this section “rare cancer” means a cancer that affects not more than 1 in 2000 people in the United Kingdom.
3 Disclosure of information for research purposes¶
.(da) the disclosure is made for the purpose of facilitating the carrying out of relevant clinical trials (whether or not in the United Kingdom) by enabling potential participants in those trials to be identified and contacted,
(5A) In subsection (5)(da) “relevant clinical trials” means clinical trials in connection with the research and development of orphan medicinal products for the diagnosis, prevention or treatment of cancers that in the opinion of NHS England are rare cancers; and for this purpose— orphan medicinal product means a medicinal product in relation to which the orphan criteria set out in regulation 50G(2) of the Human Medicines Regulations 2012 (S.I. 2012/1916) are met; rare cancer means a cancer that affects not more than 1 in 2000 people in the United Kingdom.
(6A) A power conferred by this section to process information does not authorise the processing of information which would contravene the data protection legislation (but the power is to be taken into account in determining whether the processing would contravene that legislation). (6B) In subsection (6A) “the data protection legislation” and “processing” have the same meanings as in the Data Protection Act 2018 (see section 3 of that Act).